ELSI Publications and Products

The Ethical, Legal and Social Implications (ELSI) Research Program funds and manages grants to support research and education projects that examine ELSI issues, and also supports workshops, research consortia and policy conferences related to these issues.

Between 1990 and 2001, the ELSI program devoted more than $86 million to support some 235 research and education projects and conferences. These ELSI grants and contracts have resulted in more than 550 peer-reviewed journal articles, books, newsletters, Web sites and television and radio programs. Those products are listed below, arranged by the principle investigator's (PI) last name. For further project descriptions, use the ELSI Research Program Abstracts and Activities Database search.

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Publications for Other ELSI Program Activities

Publications for Grants and Contracts

ADEBAMOWO, Clement "West African Bioethics Training Program"
Adebamowo CA (2007). West African Bioethics Training Program: Raison D'être. Afr J Med Med Sci, 36 Suppl: 35-8. [PubMed]

Winkelman C (2008). Inflammation and Genomics in the Critical Care Unit. Crit Care Nurs Clin North Am, 20(2): 213-221. [PubMed]

Fanshawe TR, Prevost AT, Roberts JS, Green RC, Armstrong D, Marteau TM (2008). Explaining Behavior Change after Genetic Testing: The Problem of Collinearity between Test Results and Risk Estimates. Genet Test, 12(3): 381-386. [PubMed Central]

AMUNDSON, Ronald "Why Do Disability Activists Reject the Genome Project?"
Amundson R, Tresky S (2008). Bioethics and disability rights: Conflicting values and perspectives. Journal of Bioethical Inquiry, 5(2-3): 111-123. [Georgetown GenETHX]

ANDERSON, Gwen "Genetics in Nursing Literature and Continuing Education"
Anderson G (1999). State of the science: Social, psychological, ethical nursing research in genetics. Biological Research for Nursing, 1(2): 133-46. [PubMed]



Anderson G, Read CY, Monsen R (2000). Genetics, Nursing, and Public Policy: Setting an International Agenda. Policy, Politics and Nursing Practice, 1(4): 245-255. [Abstract]

ANDREWS, Lori "Conceptual Frameworks for Genetics Policy"
Andrews LB (1995). Genetic Fallout: New Technologies Are Changing the Legal Landscape. Trial, 31(12): 20-23, 25-27. [PubMed]

Andrews LB (1996). Prenatal Screening and the Culture of Motherhood. Hastings Law Journal, 47(4): 967-1006. [PubMed]

Andrews LB (1997). Compromised Consent: Deficiencies in the Consent Process for Genetic Testing. J Am Med Womens Assoc, 52(1): 39-42, 44. [PubMed]

Andrews LB (1997). Gen-etiquette: Are There Moral and Legal Responsibilities to Share Genetic Information within Families? In Rothstein M, Ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press.

Andrews LB (1997). Past as Prologue: Sobering Thoughts about Genetic Enthusiasm. Seton Hall Law Rev, 27(3): 893-918. [PubMed]

Andrews LB (1997). Body Science. American Bar Association Journal, 83: 44-49.

Andrews LB (1999). Predicting and Punishing Anti-Social Acts In Carson RA, Rothstein M, Bloom FE, eds, Behavioral Genetics: The Clash of Culture and Biology (224p). Baltimore, MD: Johns Hopkins University Press.

"Legal Issues in the Regulation and Use of Genetic Testing." in Stanford Working Group on Breast Cancer Final Report. [Forthcoming]

Angrist M (2009). Eyes wide open: the personal genome project, citizen science and veracity in informed consent. Per Med, 6(6): 691-9. [PubMed Central]

ARAR, Nedal "Beliefs and Attitudes Towards Hereditary Prostate Cancer"
Plaetke R, Thompson I, Sarosdy M, Harris JM, Troyer D, Arar NH (2002). Genetic fieldwork for hereditary prostate cancer studies. Urologic Oncology, 7(1): 19-27. [PubMed]

ARAR, Nedal "Cultural and Ethical Issues in Genetic Family Studies"
Arar NH, Plaetke R, Arar MY et al (2002). Incorporating the Contextual Assessment Approach to regimens used in genetic family studies. Genet Med, 4(6): 451-63. [PubMed]

Arar NH, Hazuda HP, Plaetke R et al (2003). Familial Clustering of Diabetic Nephropathy: Perceptions and Risk Recognition Among Mexican-American Patients With a Family History of Diabetes. Diabetes Spectrum, 16(3): 136-142.

ARMSTRONG, Katrina "Distrust, Race/Ethnicity, and Predictive Genetic Testing"
Peters N, Rose A, Armstrong K (2004). The Association between Race and Attitudes about Predictive Genetic Testing. Cancer Epidemiol Biomarkers Prev, 13(3): 361-5. [PubMed]

ARNOS, Kathleen "Summer Program in Genetics for Audiology Faculty"
Arnos KS, Della Rocca MG, Karchmer MA, Culpepper B, Cohn WF (2004). Genetics Content in the Graduate Audiology Curriculum: A Survey of Academic Programs. Am J Audiol, 13(2): 126-134. [PubMed]

Burton SK, Blanton SH, Culpepper B, White KR, Pandya A, Nance WE, Arnos KS (2006). Education in the genetics of hearing loss: A survey of early hearing detection and intervention programs. Genet Med, 8(8): 510-7. [PubMed]

ARONOWITZ, Robert "History of Breast Cancer Risk, 1900-Present"
Aronowitz RA (1998). The dilemma of genetic testing: the "breast cancer gene" and the physician's role, as ethics case study. ACP Observer, 18(3): 1.

Aronowitz RA (2001). Do not delay: Great cancer and Time, 1900-1970. Milbank Q, 79(3): 355-386. [PubMed]

Aronowitz RA (2007). Unnatural History: Breast Cancer and American Society. New York City: Cambridge University Press. 366 pp.

ASCH, David "Genetic Testing And The Economics of Life Insurance"
Armstrong K, Weiner J, Weber B, Asch DA (2003). Early adoption of BRCA1/2 testing: who and why. Genet Med, 5(2): 92-8. [PubMed]

Armstrong K, Weber B, FitzGerald G et al (2003). Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A, 12A(3): 359-64. [PubMed]

ASCH, David "How Much Information about the Risk of Cystic Fibrosis Do Couples Want to Know?"
Asch D, Hershey JC (1995). Why Some Health Policies Don't Make Sense at the Bedside. Ann Intern Med, 122(11): 846-50. [PubMed]

Asch D Hershey J, Pauly M et al (1996). Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis. Am J Public Health, 86(5): 684-90. [PubMed]

ASCH, David "Prescriptive Decision Modeling for Cystic Fibrosis Screening"
Asch D et al (1993). Clarification Needed to Cystic Fibrosis Model. Am J Obstet Gynecol, 168: 1358-9. [PubMed]

Asch DA, Patton JP, Hershey JC, Mennuti MT (1993). Reporting the Results of Cystic Fibrosis Carrier Screening. Am J Obstet Gynecol, 168(1 Pt 1): 1-6. [PubMed]

Asch DA, Hershey JC, DeKay ML et al (1998). Carrier Screening for Cystic Fibrosis: Costs and Clinical Outcomes. Med Decis Making, 18(2): 202-12. [PubMed]

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BAILEY, Donald "ELSI Scale-Up: Large Sample Gene Discovery & Disclosure"
Torke AM, Corbie-Smith G, Branch WT (2004). African American patients' perspectives on medical decision making. Archives of Internal Medicine, 164(5): 525-30. [PubMed]

Corbie-Smith G, Moody-Ayers S, Thrasher A (2004). Closing the circle: Minority inclusion in research and reduction of health disparities. Archives of Internal Medicine, 164(13): 1362-4. [PubMed]

Van Riper M, Gallo A (2005). Family, health, and genomics In Crane DR, Marshall ES, Eds., Handbook of families and health: Interdisciplinary perspectives. Thousand Oaks: Sage Publications Inc.

Van Riper M (2005). Genetic testing and the family. Journal of Midwifery and Women's Health, 50: 227-233. [PubMed]

Rothschild BB, Estroff SE, Churchill LR (2005). The cultural calculus of consent. Clinical Obstetrics and Gynecology, 48(3): 574-94. [PubMed]

Bailey DB, Skinner D, Warren SR (2005). Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit. Am J Public Health, 95(11): 1889-93. [PubMed]

Henderson GE, Easter MM, Zimmer C, King NMP, Davis A, Rothschild B, Churchill L, Wilfond B, Nelson D (2006). Therapeutic misconception in early phase gene transfer trials. Soc Sci Med, 62: 239-53. [PubMed]

Skinner D, Schaffer R (2006). Families and genetic diagnoses in the genomic and Internet age. Infants & Young Children, 19: 16-24.

Van Riper M (2006). Ethical, legal, and social implications In Runge MS, Patterson WC, (Eds.), Principles of molecular medicine (Pp. 61-68). Totowa, NJ: Humana Press Inc.

Van Riper M (2006). Family nursing in the era of genomic health care: We should be doing so much more!. Journal of Family Nursing, 12: 111-118. [PubMed]

Sterling R, Henderson GE, Corbie-Smith G (2006). Public Willingness to Participate in and Public Opinions About Genetic Variation Research: A Review of the Literature. Am J Public Health, 96(11): 1971-78. [PubMed]

Bailey DB, Beskow LM, Davis AM, Skinner D (2006). Changing Perspectives on the Benefits of Newborn Screening. Ment Retard Dev Disabil Res Rev, 12(4): 270-9. [PubMed]

Whitmarsh I, Davis AM, Skinner D, Bailey DB (2007). A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease. Soc Sci Med, 65(6): 1082-1093. [PubMed]

Skinner D, Weisner T (2007). Sociocultural studies of families of children with intellectual disabilities. Ment Retard Dev Disabil Res Rev, 13(4): 302-12. [PubMed]

King NMP (2006). Genes and TS: What will they tell us? Scientific, ethical, and social implications. In Walkup J, (ed.):, Advances in Neurology: Tourette Syndrome. Philadelphia: Lippincott Williams & Wilkins.

King NMP, Churchill LR. Assessing and comparing potential benefits and risks of harm. In Oxford textbook of clinical research ethics, E Emanuel, D Wendler, R Crouch (Eds.). Oxford University Press. [In Press]

King NMP. The glass house: Assessing bioethics. In The ethics of bioethics. L Eckenwiler, F Cohn (Eds). Johns Hopkins University Press. [In Press]

Schaffer R, Kuczynski K, Skinner D (2008). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30(1): 145-149. [PubMed]

Bailey D, Skinner D, Davis A, Whitmarsh I, Powell C (2008). Concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3): 693-704. [PubMed]

Bailey DB Jr, Armstrong FD, Kemper AR, Skinner D, Warren SF (2009). Supporting family adaptation to presymptomatic and ?untreatable? conditions in an era of expanded newborn screening. J Pediatr Psychol, 34(6): 648-61. [PubMed]

BASSETT, Susan "Perceptions of Risk and Genetic Testing for AD"
Chase GA, Geller G, Havstad SL, Holtzman NA, Bassett SS (2002). Physicians' propensity to offer genetic testing for Alzheimer's disease: Results from a survey. Genet Med, 4(4): 297-303. [PubMed]

BIESECKER, Barbara Bowles "A Conference on Human Genome Research Implications"
Biesecker BB, Vockley CW, Conover E (1993). Implications of Human Genome Research: Impact on Graduate Education in Genetic Counseling. J Genet Couns, 2(3): 213-229. [PubMed]

Punales-Morefon D, Rapp R (1993). Ethnocultural Diversity and Genetic Counseling Training: The Challenge for a Twenty-first Century. J Genet Couns, 2(3): 155-158.

Rapp R (1993). Amniocentesis in Sociocultural Perspective. J Genet Couns, 2(3): 183-196. [PubMed]

Smith ACM (1993). Update on Master's Genetic Counseling Training Programs: Survey of Curriculum Content and Graduate Analysis Summary. J Genet Couns, 2(3): 197-211.

Smith SC, Warren NS, Misra L (1993). Minority Recruitment into the Genetic Counseling Profession. J Genet Couns, 2(3): 171-181.

Weil J, Mittman I (1993). A Teaching Framework for Cross-Cultural Genetic Counseling. J Genet Couns, 2(3): 159-69.

BLACKER, Deborah "Genetic Knowledge and Attitudes in Alzheimer's Disease"
Blacker D, Tanzi RE (2000). Genetic Approaches to Risk Assessment: Implications for Early Diagnosis In Scinto L, Daffner K, (ed), Early Diagnosis of Alzheimer's Disease. Totowa, New Jersey: Humana Press.

Blacker D (2000). New Insights into Genetic Aspects of Alzheimer's Disease: Does Genetic Information Make a Difference in Clinical Practice?. Postgrad Med, 108(5): 119-22, 125-6, 129. [PubMed]

Blacker D (2000). New insights into genetic aspects of Alzheimer's disease. Does genetic information make a difference in clinical practice?. Postgrad Med, 108(5): 119-22, 125-6, 129. [PubMed]

Tanzi RE, Blacker D (2001). Genetic Screening in Alzheimer's Disease: Usefulness, limits, and future prospects. Generations, 24(1): 58.

BLOSS, Cinnamon S "Response to Testing Among Individual Consumers of DTC Personal Genomics Services"
Bloss CS, Schork NJ, Topol EJ (2011). Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med, 364(6): 524-34. [PubMed]

Bloss CS, Darst BF, Topol EJ, Schork NJ (2011). Direct-to-consumer personalized genomic testing. Hum Mol Genet, 20(R2): R132-41. [PubMed]

Bloss CS, Madlensky L, Schork NJ, Topol EJ (2011). Genomic information as a behavioral health intervention: can it work?. Per Med, 8(6): 659-57. [PubMed]

BLUMENTHAL, David "Academic-Industry Relationships in Genetics"
Blumenthal D (1992). Academic-Industry Relationships in the Life Sciences. JAMA, 268(23): 3344-3349. [PubMed]

Blumenthal D (1992). Academic-industry relationships in the life sciences. Extent, consequences, and management. JAMA, 268(23): 3344-9. [PubMed]

Blumenthal D (1994). Growing Pains for New Academic/Industry Relationships. Health Aff (Millwood), 13(3): 176-193. [PubMed]

Blumenthal D, Causino N, Campbell E, Louis KS (1996). Relationships between academic institutions and industry in the life sciences--an industry survey. N Engl J Med, 334(6): 368-73. [PubMed]

Blumenthal D, Campbell EG, Causino N, Louis KS (1996). Participation of life-science faculty in research relationships with industry. N Engl J Med, 335(23): 1734-9. [PubMed]

Campbell EG, Clarridge BR, Gokhale M et al (1997). Withholding Research Results in Academic Life Science. JAMA, 277(15): 1224-1228. [PubMed]

Blumenthal D, Campbell EG, Anderson MS, Causino N, Louis KS (1997). Withholding research results in academic life science. Evidence from a national survey of faculty. JAMA, 277(15): 1224-8. [PubMed]

Blumenthal D, Causino N, Campbell EG (1997). Academic-industry research relationships in genetics: a field apart. Nat Genet, 16(1): 104-8. [PubMed]

Campbell EG, Weissman JS, Blumenthal D (1997). Relationship between market competition and the activities and attitudes of medical school. JAMA, 278(3): 222-6. [PubMed]

Campbell EG, Louis KS, Blumenthal D (1998). Looking a gift horse in the mouth: corporate gifts supporting life sciences research. JAMA, 279(13): 995-9. [PubMed]

Campbell EG, Clarridge BR, Gokhale M, Birenbaum L, Hilgartner S, Holtzman NA, Blumenthal D (2002). Data Withholding in Academic Genetics: Evidence from a National Survey. JAMA, 287(4): 473-480. [PubMed]

BLUMENTHAL, David "Data-Sharing and Data-Withholding in Genetics Research"
Campbell EG, Clarridge BR, Gokhale M, Birenbaum L, Hilgartner S, Holtzman NA, Blumenthal D (2002). Data Withholding in Academic Genetics: Evidence from a National Survey. JAMA, 287(4): 473-480. [PubMed]

BOTKIN, Jeffrey "Behavioral and Psychosocial Effects of BRCA1 Testing"
Croyle RT, Smith KR, Botkin JR, Baty B, Nash J (1997). Psychological Responses to BRCA1 Mutation Testing: Preliminary Findings. Health Psychology, 16(1): 63-72. [PubMed]

Baty JB, Venne VL, McDonald J, Croyle RT, Smith K, Botkin JR (1997). Genetic Counseling Protocols for BRCA1 testing. J Genetic Counseling, 6(2): 223-244.

Botkin JR (1998). Ethical Issues and practical problems in preimplantation genetic diagnosis. J Law Med Ethics, 26(1): 17-28. [PubMed]

Smith KR, Zick CD, Mayer RN, Botkin JR (1999). Genetic testing and adverse selection in the market for life insurance: preliminary findings for the BRCA1 gene mutation In Thompson AK, Chadwick RF, (Eds), Genetic Information: Acquisition, Access and Control (p.57-70). New York, NY: Kluwer Academic/ Plenum Publishers.

Mayer RN, Smith KR, Zick CD, Botkin JR (1999). Coercion, control and consequences in genetic testing: views on insurance among tested individuals and the general public In Thompson, Chadwick, (Eds.), Genetic Information: Acquisition, Access and Control (p.41-56). New York, NY: Kluwer Academic/ Plenum Publishers.

Smith KR, West J, Croyle R, Botkin JR (1999). Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev, 8(4 Pt 2): 385-92.

Botkin J (1999). Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility In Shaw G, (ed), Cancer Genetics for the Clinician. Plenum Press.

Hamann HA, Croyle RT, Venne VL, Baty B, Smith KR, Botkin JR (2000). Attitudes toward the genetic testing of children among individuals tested for a BRCA1 gene mutation. Am J Med Genet, 92: 25-32.

Zick CD, Smith KR, Mayer RN, Botkin JR (2000). Genetic testing, adverse selection, and the demand for life insurance. Am J Med Genet, 93: 29-39.

Botkin JR, Smith KR, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E (2003). Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet A, 118A(3): 201-9. [PubMed]

BOTKIN, Jeffrey "Ensuring Confidentiality in the Publication of Pedigrees"
Botkin J (1995). Fetal privacy and confidentiality. Hastings Cent Rep, 25(5): 32-40. [PubMed]

Botkin JR, McMahon WM, Smith KR, Nash JE (1998). Privacy and Confidentiality in the Publication of Pedigrees: A Survey of Investigators and Biomedical Journals. JAMA, 279(22): 1808-1812. [PubMed]

Byers PH, Ashkenas J (1998). Pedigrees-publish? or perish the thought?. Am J Hum Genet, 63(3): 678-81. [PubMed]

BOTKIN, Jeffrey "Genetic Testing and Screening for Mental Health Disorders"
Botkin J, McMahon W, Francis L (eds) (1999). Genetics and Criminality: The Potential Misuse of Scientific Information in Court Washington, DC: The American Psychological Association Press 277p.

BOTKIN, Jeffrey "Prenatal Diagnosis and the Selection of Children"
Botkin JR (1998). Ethical issues and practical problems in preimplantation genetic diagnosis. J Law Med Ethics, 26(1): 17-28. [PubMed]

Botkin JR (2000). Line erasing: developing professional standards for prenatal diagnosis In Parens E, Asch A, eds, Prenatal Testing and Disability Rights (288-307). Washington, DC: Georgetown University Press.

Botkin JR (2000). Wrongful life and wrongful birth actions In Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology. John Wiley and Sons.

Botkin J.R. Review of "Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children 19s Futures" by Dena Davis, Cambridge Healthcare Quarterly. 2002; 11(1): 102-105.

Botkin J.R. "Preimplantation genetic diagnosis and the biologic selection of children." Kaiser Permanente Newsletter, January 2002.

Botkin J.R. "Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis." Florida State University Law Review (In press).

BOTKIN, Jeffrey "Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening"
Lewis MH, Goldenberg A, Anderson R, Rothwell E, Botkin JR (2011). State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics, 127: 703-712. [PubMed]

BOTKIN, Jeffrey "Parent Education about Newborn Screening and Bloodspot Retention"
Botkin JR, Rothwell E, Anderson R, Stark L, Goldenberg A, Lewis M, Burbank M, Wong B (2012). Public attitudes regarding the use of residual newborn screening specimens for research. Pediatrics, 129(2): 231-8. [PubMed]

BOWEN, Deborah "Counseling Strategies for Breast Cancer Risk"
Bowen DJ, Farkas A, Vernon SW (1999). Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public. Cancer Epidemiol Biomarkers Prev, 8(4 Pt 2): 326-8. [Pubmed]

Durfy SJ, Bowen DJ, McTiernan A et al (1999). Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington. Cancer Epidemiol Biomarkers Prev, 8(4): 369-75. [PubMed]

McTiernan A, Kuniyuki A, Yasui Y et al (2001). Comparisons of two breast cancer risk estimates in women with a family history of breast cancer. Cancer Epidem Biomar, 10(4): 333-338.

Bowen DJ, Burke W, Yasui Y et al (2002). Effects of risk counseling on interest in breast cancer genetic testing for lower risk women. Genet Med, 4(5): 359-365. [PubMed]

Bowen DJ, Ludman E, Press N et al (2003). Achieving utility with family history - Colorectal cancer risk. Am J Prev Med, 24(2): 177-182.

Bowen DJ, Singal R, Eng E, Crystal S, Burke W (2003). Jewish identity and intentions to obtain breast cancer screening. Cultur Divers Ethnic Minor Psychol, 9(1): 79-87. [PubMed]

Bowen DJ, Helmes A, Powers D et al (2003). Predicting breast cancer screening intentions and behavior with emotion and cognition. J Soc Clin Psychol, 22(2): 213-232.

Bowen DJ, Bourcier E, Press N, Lerwin FM, Burke W (2004). Effects of Individual and Family Functioning on Interest in Genetic Testing. Community Genet, 7(1): 25-32. [PubMed]

Bowen DJ, Bradford J, Powers D (2006). Comparing sexual minority status across sampling methods and populations. Women Health, 44(2): 121-34. [PubMed]

Bowen DJ, Burke W, Culver JO, Press N, Crystal S (2006). Effects of counseling Ashkenazi Jewish women about breast cancer risk. . [PubMed]

BRANDT-RAUF, Paul "The ELSI of Genetic Testing in the Workplace"
Brandt-Rauf SI, Brandt-Rauf E, Gershon R, Brandt-Rauf PW (2011). The differing perspectives of workers and occupational medicine physicians on the ethical, legal and social issues of genetic testing in the workplace. New Solut, 21(1): 89-102. [PubMed]

BROWN, R. Steven "State Governments and the Human Genome Project"
Brown RS (1991). The State Response to Genetic Research. J State Gov, 64(3): 98-99.

Brown RS, Marshall K eds (1992). Advances in Genetic Information: A Guide for State Policy Makers Lexington, KY: The Council of State Governments 123p.

Brown RS (1992). State Governments and the Human Genome Project. Genetic Resour, 6(2): 19-21.

BROWNER, Carole "Genetic Counseling Strategies with Mexican-Origin Women"
Balzano S, Preloran HM, Browner CH (2002). El protocolo medico como una forma de performance cultural: La neutralidad profesional y su efecto en la vida de los Pacientes y sus Familias" (The consequences of competing client and clinician agendas in prenatal care). Revista de Investigaciones Folclóricas, 17: 145-155.

Browner CH, Preloran HM, Casado MC, Bass H, Walker A (2003). Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients. Soc Sci Med, 56(9): 1933-46. [PubMed]

Preloran HM, Balzano S, Browner CH (2003). The Roles of Trust and Cross-Cultural Miscommunication in Clinical Decision-Making. Californian Journal of Health Promotion, 1(2): 198-207.

Preloran HM, Browner CH, Balzano S. "Globalizacion y salud: El impacto de un protocolo medico sin fronteras." (Globalization and Health: The Impact of a Medical Protocol Without Borders). Revista Anual Realidad del Cono Sur. 2005 (Buenos Aires: Universidad Argentina John F. Kennedy).

Preloran HM, Browner CH, Lieber E (2005). Impact of Interpreters' Approach on Latinas' Use of Amniocentesis. Health Educ Behav, 32(5): 599-612. [PubMed]

Browner CH, Preloran HM. "Culture and Communication in the Realm of Fetal Diagnosis. Unique Considerations for Latino Patients." In, Neil F. Sharpe and Ronald F. Carter, eds. Genetic Testing: Current Practices, Ethical Concerns, Legal Considerations. NY: John Wiley & Sons. (In press)

Browner CH, Preloran HM. "Entering the Field: Recruiting Latinos for Ethnographic Work." In, Richard Wright, ed. Handbook of Fieldwork. London: Sage. (In press)

BROWNER, Carole "Use of Amniocentesis by Mexicans and Mexican-Americans"
Preloran HM, Browner CH (1997). Paternidad Prenatal: parejas de origen mexicano decidiendo sobre el uso del diagnostico fetal. Revisa Anual de Investigaciones Folkloricas, 12.

Preloran HM, Browner CH (1997). Rol de la tradición en la prácticas del embarazo: efectos de la información genética entre Mexicanas residentes en Estados Unidos. Revista de Investigaciones Folkloricas, 12: 67-75.

Preloran, H.M., Browner, C.H., and Balzano, S. "Texto y contexto en el analisis de la narrativa: Renegociación de roles en situaciones médicas con peligro de vida." Scripta Ethnologica. 1999; 20: 23-36. (Buenos Aires: Centro Argentino de Ethnologia Americana).

Browner CH, Preloran HM (1999). Male Partners' Role in Latinas' Amniocentesis Decisions. J Genet Couns, 8(2): 85-108. [PubMed]

Browner CH, Preloran HM, Cox SJ (1999). Ethnicity, Bioethics, and Prenatal Diagnosis: the Amniocentesis Decisions of Mexican-origin Women and their Partners. Am J Public Health, 89(11): 1658-66. [PubMed Central]

Browner CH, Preloran HM (2000). Para sacarse la espina (To Get Rid of the Doubt): Mexican Immigrant Women's Amniocentesis Decisions In Saetnan AR, Oudshoorn N, Kirejczyk M, eds, Bodies of Technology: Women's Involvement with Reproductive Medicine (pp. 368-383). Columbus: Ohio State University Press.

Browner CH, Preloran HM (2000). Interpreting Low-Income Latinas' Amniocentesis Refusals. Hisp J Behav Sci, 22(3): 346-68.

Browner CH, Preloran HM (2000). Latinas, Amniocentesis and the Discourse of Choice. Cult Med Psychiatry, 24(3): 353-75. [PubMed]

Browner CH (2000). Situating Women's Reproductive Activities. Am Anthropol, 102(4): 773-88.

Preloran HM, Browner CH, Lieber E (2001). Strategies for Motivating Latino Couples' Participation in Qualitative Health Research. Am J Public Health, 91(11): 1832-1841.

Root R, Browner CH (2001). Practices of the Pregnant Self: Compliance with and Resistance to Biomedical Prenatal Norms. Cult Med Psychiatry, 25(2): 195-223.

Markens S, Browner CH, Preloran HM (2003). I'm Not the One They're Sticking the Needle Into: Latino Couples, Fetal Diagnosis, and the Discourse of Reproductive Rights. Gender & Society, 17(3): 462-81.

Browner CH, Preloran HM (2004). Expectations, Emotions, and Medical Decision Making: A Case Study on the Use of Amniocentesis. Transcult Psychiatry, 41(4): 427-44. [PubMed]

Browner CH, Preloran HM, and Balzano S. (Accepted for publication.) "Identity Management in an At-Risk Medical Situation." In, Mary Lawler and Cheryl Mattingly, eds. The Engaged Self.

BUCHANAN, Allan "The Human Genome Initiative and Limits of Ethical Theory"
Buchanan AE, Brock DW, Daniels N, Wickler D (2000). From Chance to Choice: Genetics & Justice Cambridge, UK: Cambridge University Press 398p.

BULGER, Ruth "Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders"
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BURHANSSTIPANOV, Linda "Genetic Education for Native Americans"
Burhansstipanov L, Bemis L, Dignan M, Dukepoo F (2001). Development of a genetics education workshop curriculum for Native American college and university students. Genetics, 158(3): 941-948. [PubMed]

Burhansstipanov L, Bemis L, Dignan M (2001). Native American Cancer Education: Genetic and Cultural Issues. J Cancer Educ, 16(3): 142-145. [PubMed]

Burhansstipanov L, Bemis L, Dignan M (2002). Native American Recommendations for Genetic Research to Be Culturally Respectful. Jurimetrics, 42(2): 149-57. [PubMed]

Dignan MB, Burhansstipanov L, Bemis L (2005). Genetic Education for Native Americans - Evaluation Methodology and Results. Genetics, 169: 317-321.

Dignan MB, Burhansstipanov L, Bemis L (2005). Successful Implementation of Genetic Education for Native Americans Workshops at National Conferences. Genetics, 169: 516-521. [PubMed]

Burhansstipanov L, Bemis L, Kaur JS, Bemis G (2005). Sample genetic policy language for research conducted with Native Communities. J Cancer Educ, 20(1 Suppl): 52-57. [PubMed]

Gamito E, Burhansstipanov L, Krebs LU, Bemis L, Bradley A (2005). Data Collection Using An Audience Response System. J Cancer Educ, 20(1 Suppl): 80-86. [PubMed]

Burhansstipanov L, Christopher S, Schumacher SA (2005). Lessons learned from community-based participatory research in Indian country. Cancer Control, 12(Suppl 2): 70-6. [PubMed]

Romero F, Bemis L, Burhansstipanov L, Dignan M (2001). Genetic Research and Native American Cultural Issues. J of Women and Minorities in Science and Engineering, 7: 97-106.

BURKE, Wylie "Evaluating Use of Genetic Information: A Model Process"
Burke W, Pinsky LE, Press NA (2001). Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications. Am J Med Genet A, 106(3): 233-40. [PubMed]

Burke W (2002). Genetic testing. New Engl J Med, 347(23): 1867-75. [PubMed]

Burke W, Culver J, Pinsky L, Hall S, Reynolds SE, Yasui Y, Press N (2009). Genetic assessment of breast cancer risk in primary care practice. Am J Med Genet A, 149A(3): 349-56. [PubMed]

BURKE, Wylie "Genetic Susceptibility Testing for Breast Cancer"
Burke W, Kahn MJE, Garber JE, Collins FS (1996). "First do no harm" also applies to cancer susceptibility testing. Cancer J Sci Am, 2(5): 150-2. [PubMed]

Burke W, Press N, Pinsky L (1997). Breast Cancer Genetics from a Primary Care Perspective. Cancer, 80(3): 621-626.

Press NA, Burke W, Durfy SJ (1997). How are Jewish Women Different From all Other Women? An Anthropological Perspective on Genetic Susceptibility Testing for Breast Cancer Among Ashkenazi Jewish Women. Health Matrix: Journal of Law-Medicine, 7(1): 135-162.

Durfy SJ, Buchanan TE, Burke W (1998). Testing for Inherited Susceptibility to Breast Cancer: A Survey of Informed Consent Forms for BRCA1 and BRCA2 Mutation Testing. Am J Med Genet. []

Bars J., J. Hull and W. Burke. "Breast Cancer." Genline, Roberta Pagon, Ed. 1998.

Burke, W. and M.B. Laya. [Invited editorial] "Cancer genetics and survival; another link in the chain of evidence." J Natl Cancer Inst. 1999; 91: 201-3.

Pinsky LE (1999). How to Interpret Sensitivity and Specificity In Burkholder L, Migeon M, Paauw D, eds, Internal Medicine Clerkship Guide (p24). St. Louis: Mosby Yearbook.

Durfy SJ, Bowen DJ, McTiernan A, Sporleder J, Burke W (1999). Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington. Cancer Epidemiol Biomarkers Prev, 8(4): 369-375. [Pubmed]

Burke W, Press N, Pinsky L (1999). BRCA1 and BRCA2: a small part of the puzzle. J Natl Cancer Inst, 91(11): 904-5. [PubMed]

Pinsky LE, Deyo RA (2000). Clinical Guidelines: A Strategy for Translating Evidence into Clinical Practice In Geyman J, Deyo R, Ramsey S, eds, Evidence-Based Clinical Practice: Concepts and Approaches (177p). Woburn: Butterworth-Heinemann Medical.

Press NA, Burke W (2000). If You Care About Women's Health, Perhaps You Should Care About the Psychosocial Risks of Direct Marketing of Tamoxifen to Consumers. Eff Clin Pract, 3(2): 98-103.

Coughlin S, Burke W (2000). Public Health Issues in Genetic Testing for Predisposition to Cancer In Khoury MJ, Burke W, Thomson E, eds, Genetics and Public Health in the 21st Century (639p). New York: Oxford University Press.

Press NA, Yasui Y, Reynolds S, Durfy SJ, Burke W (2001). Women's Interest in Genetic Testing for Breast Cancer Susceptibility May be Based on Unrealistic Expectations. Am J Med Genet, 99: 99-110.

Burke W, Pinsky LE, Press NA (2001). Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications. Am J Med Genet, 106: 233-240.

Burke W, Olsen AH, Pinsky LE, Reynolds SE, Press NA (2001). Misleading Presentation of Breast Cancer in Popular Magazines. Eff Clin Pract, 4(2): 58-64. [PubMed]

Gardner, G.C. and L.E. Pinsky. "Perception and Attitude of Medical School Faculty Toward Participation in University Sponsored Continuing Medical Education." J Cont Educ Health Prof. (In press).

Burke W (2002). Genetic testing. New Engl J Med, 347(23): 1867-75. [PubMed]

Koenig, B.A. and N.A. Press. "Desperately seeking narratives of genetic testing for breast cancer." Bioethics in Context. Barry Hoffmaster, Ed. Oxford University Press. (To be published)

BURKE, Wylie "Genomic Health Care and the Medically Underserved"
Burke W, Press N (2006). Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4(2): 185-91. [PubMed]

Burke W, Press N (2006). Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4(2): 185-91. [PubMed]

Burke W, Press N (2006). Genetics as a tool to improve cancer outcomes: ethics and policy. Nat Rev Cancer, 6(6): 476-82. [PubMed]

Burke W, Diekema DS (2006). Ethical issues arising from the participation of children in genetic research. J Pediatr, 149(1 Suppl): S34-8. [PubMed]

Carlsten C, Burke W (2006). Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA, 296(20): 2480-2. [PubMed]

Carlsten C, Burke W (2006). DNA patents and diagnostics: not a pretty picture. JAMA, 28(20): 2480-2. [PubMed]

Fryer-Edwards K, Fullerton SM (2006). Relationships with test-tubes: where's the reciprocity?. Am J Bioeth, 6(6): 36-38. [PubMed]

Fryer-Edwards K, James R, Fullerton SM, Burke W. Response to NIH GWAS RFI: Comments re: NIH Proposed Policy for Sharing of Data from Genome-wide Association Studies. Submitted to NIH, Nov. 30, 2006.

Haga SB, Thummel KE, Burke W (2006). Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet Genomics, 16(12): 847-854. [PubMed]

Paradies YC, Montoya MJ, Fullerton SM (2007). Racialized Genetics and the Study of Complex Diseases: the thrifty genotype revisited. Perspectives in Biology and Medicine, 50(2): 203-227. [PubMed]

Henrikson NB, Burke W, Veenstra DL (2008). Ancillary risk information and pharmacogenetic tests: social and policy implications. The Pharmacogenomics Journal, 8: 85-89. [PubMed]

Burke W, Zimmern R (2007). Moving Beyond ACCE: An Expanded Framework for Genetic Test Evaluation. . [Full Text]

Burke W, Kroese M, Zimmern R (2007). Defining purpose: a key step in genetic test evaluation. Genet Med, 9(10): 675-81. [PubMed]

Burke W, Psaty BM (2007). Personalized medicine in the era of genomics. JAMA, 298(14): 1682-4. [PubMed]

Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C (2007). Pharmacogenomic testing to prevent aminoglycoside-induced hearing loss in cystic fibrosis patients: Potential impact on clinical, patient, and economic outcomes. Genet Med, 9(10): 695-704. [PubMed]

Carlson RJ (2008). Pre-emptive public policy for genomics. Journal of Public Health, Policy and Law, 33: 39-51. [PubMed]

Carlson RJ (2008). Preemptive public policy for genomics. J Health Polit Policy Law, 33(1): 39-51. [PubMed]

Tarini B, Burke W, Wilfond B (2008). Waiving informed consent in newborn screening research: balancing social value and respect. Am J Med Genet, 148(1): 23-30. [PubMed]

Burke W, Holland S, Kuszler P, Starks H, Press N (2008). Translational genomics: Seeking a shared vision of benefit. Am J Bioeth, 8(3): 54-6. [PubMed]

Jaja C, Burke W, Thummel K, Edwards K, Veenstra DL (2008). Cytochrome P450 enzyme polymorphism frequency in Indigenous and Native American populations: A systematic review. Commun Genet, 11(3): 141-9. [PubMed]

Goering S, Holland S, Fryer-Edwards K (2008). Transforming genetic research practices with marginalized communities: a case for responsive justice. Hast Center Report, 38(2): 43-53. [PubMed]

James RD, Yu JH, Henrikson NB, Bowen DJ, Fullerton SM (2008). Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet, 11(4): 241-9. [PubMed]

Shields AE, Burke W, Levy DE (2008). The use of available genetic tests among minority-serving physicians in the US. Genet Med, 10: 404-14. [PubMed]

Haga SB, Burke W (2008). Pharmacogenetic testing: not as simple as it seems. Genet Test, 10(391-5). [PubMed]

Yu J-H, Goering S, Fullerton M. Race Based Medicine and Justice as Recognition: Exploring the Phenomenon of BiDil. Cambridge Quarterly of Health Care Ethics, 2008. [In Press]

Shields, AE, Fullerton, SM, & Olden, K. Genes, environment, and cancer disparities. In Dimensions of Cancer Disparities, ed. H.. Koh, Springer: New York, NY, In Press.

Burke W (2009). Clinical validity and clinical utility of genetic tests. Current Protocols in Human Genetics, Chapter 9(Unit 9): 9.15.1-3. [PubMed]

Caulfield T, Fullerton SM, Ali-Khan SE, Arbour L, Burchard EG, Cooper R, Hardy BJ, Harry S, Hyde-Lay R, Kahn J, Kittles R, Koenig B, Lee SSJ, Malinowski M, Ravitsky V, Sankar P, Scherer SW, Séguin B, Shickle D, Suarez-Kurtz G, Daar AS (2009). Race and ancestry in biomedical research: exploring the challenges. Genome Med, 1(1): 8. [PubMed]

Veenstra DL, Burke W (2009). Pharmacogenomics and Public Health. Public Health Genomics, 12(3): 131-3. [PubMed Central]

Burke W, Laberge AM, Press N (2010). Debating clinical utility. Public Health Genomics, 13(4): 215-23. [PubMed]

Beskow LM, Burke W (2010). Offering individual genetic research results: context matters. Sci Transl Med, 2(38): 38cm20. [PubMed Central]

Carlsten C, Halperin A, Crouch J, Burke W (2011). Personalized medicine and tobacco-related health disparities: is there a role for genetics?. Ann Fam Med, 9(4): 366-71. [PubMed]

Beitelshees AL, Veenstra DL (2011). Evolving research and stakeholder perspectives on pharmacogenomics. JAMA, 306(11): 1252-3. [PubMed]

Burke W, Tarini B, Press NA, Evans JP (2011). Genetic screening. Epidemiol Rev, 33(1): 148-64. [PubMed Central]

Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M, Nelson DK, Tabor HK, Wilfond BS (2011). Research participants' perspectives on genotype-driven research recruitment. J Empir Res Hum Res Ethics, 6(5): 3-20. [PubMed]

Beskow LM, Burke W, Fullerton SM, Sharp RR (2012). Offering aggregate results to participants in genomic research: opportunities and challenges. Genet Med, 14(4): 490-6. [PubMed]

BURKE, Wylie "Guiding Clinicians in Genetic Assessment of Cancer Risk"
Burke W, Press N, Pinsky L (1997). Breast carcinoma genetics from a primary care perspective. Cancer, 80(S3): 621-26.

Burke W, Laya MB (1999). Genetic risk and breast cancer survival: another link in the chain of evidence. J Natl Cancer Inst, 91(3): 201-3. [PubMed]

Spanier BWM, Bruno MJ, Burke W et al (2003). Genetic testing. New Engl J Med, 348(11): 1066-1066.

Burke W., Pagon R.A. "Genetic testing - Reply" New Engl J Med 348(11): 1067-1067 March 13, 2003.

Warkentin TE, Bernstein RA (2003). Correspondence: Genetic Testing. New Engl J Med, 348(11): 1067-9. [PubMed]

Ramsey SD, Burke W, Clarke L (2003). An economic viewpoint on alternative strategies for identifying persons with hereditary nonpolyposis colorectal cancer. Genet Med, 5(5): 353-363.

BURKE, Wylie "Center for Genomics and Healthcare Equality"
Fullerton SM. On the absence of biology in philosophical considerations of race. In Race and Epistemologies of Ignorance, Eds S. Sullivan and N Tuana, SUNY Series on Philosophy and Race, eds. R Bernasconi and TD Sharpley-Whiting, SUNY Press: Albany, NY. May 10, 2007. 284p.

Haga S, Burke W (2008). Pharmacogenetic testing: not as simple as it seems. Genet Med, 10(6): 391-395. [PubMed]

McGrath BB, Edwards KL (2009). When Family Means More (or Less) Than Genetics: The Intersection of Culture, Family, and Genomics. Journal of Transcultural Nursing, 20(3): 270-277. [PubMed Central]

BURNS, Joan "Partnership for Genetic Services"
Wilker, N.L., M.E. Davidson, C. Holmes et al. Report to NYLCare Health Plans Medical Affairs Department: Opportunities to Enhance NYLCare's Genetics Service Delivery System. June 1998. 26pp.

Davidson M, Weingarten K, Pollin T, Wilson M, Wilker N, Hsu N, Weiss J (2000). Consumer Perspectives on Genetic Testing: Implications for bulding family-centered public policies. Families, Systems & Health: The Journal of Collaborative Family HeathCare, 18(2): 217.

Davidson M, David K, Hsu N, Pollin T, Weiss J, Wilker N, Wilson M (). Consumer Perspectives on Genetic Testing: Lessons Learned In Khoury MJ, Burke W, Thomson EJ, eds, Genetics and Public Health in the 21st Century (579-602). New York: Oxford University Press.

Back to links

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CHO, Mildred "BRCA1/2 Testing: Patient Uptake and Treatment Choices"
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Butte AJ, Kohane IS (2006). Creation and implications of a phenome-genome network. Nat Biotechnol, 24(1): 55-62. [PubMed]

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Singh J, Hallmayer J, Illes J (2007). Interacting and paradoxical forces in neuroscience and society. Nat Rev Neurosci, 8: 153-160. [PubMed]

Sankar P, Cho MK, Mountain J (2007). Race and ethnicity in genetic research. Am J Med Genet, 143(9): 961-970. [PubMed]

Greely HT (2007). The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks. Ann Rev Hum Genetics & Genomics, 8: 343-364. [PubMed]

Tabor HK, Cho MK (2007). Ethical Implications of Array CGH in complex phenotypes: points to consider in research. Genet Med, 9(9): 626-631. [PubMed]

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Caulfield T, McGuire AL, Cho MK et al (2008). Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biol, 6(3): e73. [PubMed]

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Merz JF, Kriss AG, Leonard DGB, Cho MK (2002). Diagnostic testing fails the test - The pitfalls of patents are illustrated by the case of haemochromatosis. Nature, 415(6872): 577-579.

Merz JF, Magnus D, Cho MK et al (2002). Protecting subjects' interests in genetics research. Am J Hum Genet, 70(4): 965-971. [PubMed]

Merz J.F., Leonard D.G.B., Kriss A.G., Cho M.K. "Industry opposes genomic legislation." Nature Biotechnology. 2002; 20(7): 657-657 (letter to the editor). [PubMed]

Henry MR, Cho MK, Weaver MA, Merz JF (2002). DNA patenting and licensing. Science, 297(23): 1279. [PubMed]

Cho MK, Illangasekare S, Weaver MA, Leonard DGB, Merz JF (2003). Effects of Patents and Licenses on the Provision of Clinical Genetic Testing Services. Journal of Molecular Diagnostics, 1(5): 3-8. [PubMed]

Henry MR, Cho MK, Weaver MA, Merz JF (2003). A pilot survey on the licensing of DNA inventions. J Law Med Ethics, 31(3): 442-9. [PubMed]

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King NMP (1999). Rewriting the 'Points to Consider': The Ethical Impact of Guidance Document Language. Human Gene Therapy, 10: 133-139.

CHUTE, Christopher "eMERGE Consent and Community Consultation Working Group"
McCarty, C, Chapman-Stone, D, Derfus, T, Giampietro, P, Fost, N, the Marshfield Clinic PMRP Community Advisory Group. Community consultation and communication for a population-based DNA biobank: The Marshfield Clinic Personalized Medicine Research Project. American Journal of Medical Genetics, 146A(23):3026-33. 2008. [PubMed]

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Ludman E, Fullerton SM, Spangler L, Trinidad S, Fujii MM, Jarvik G, Larson E, Burke W (2010). Glad you asked: participants' opinions of re-consent for dbGaP data submission. J Empir Res Hum Res Ethics, 5(3): 9-16. [PubMed Central]

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Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W (2011). A too limited view on participants' interests. Science.

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CITRIN, Toby "Genome Technology & Reproduction - values & public policy"
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HOFFMAN, Lance "2nd Annual Conference on Computers, Freedom, and Privacy"
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HOLTZMAN, Neil "Ethical and Legal Issues in the Diffusion of Genetic Tests"
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Holtzman NA (1992). The Diffusion of New Genetic Tests for Predicting Future Disease. FASEB Journal, 6: 2806-12.

Holtzman NA (1993). Primary Care Physicians as Providers of Frontline Genetic Services. Fetal Diagnosis and Therapy, 8(Supplement 1): 213-19.

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Holtzman NA (1994). Discovery, transfer, and diffusion of technologies for the detection of genetic disorders: Policy implications. International Journal of Technology Assessment in Health Care, 10: 562-72.

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Geller, G., B.A. Bernhardt, K. Helzlsouer et al. "Informed Consent and BRCA1 Testing." (Correspondence) Nature Genetics. December 1995; 11: 364.

Holtzman NA (1996). Are we ready to screen for inherited susceptibility to cancer?. Oncology, 10: 57-64.

Holtzman NA (1996). Medical and ethical issues in genetic screening - An academic view. Environmental Health Perspectives, 104(5): 987-90.

Holtzman NA, Andrews L (1997). Ethical and legal issues in genetic epidemiology. Epidemiol Rev, 19: 163-74.

HOLTZMAN, Neil "Ethical and Policy Issues in Cystic Fibrosis Screening"
Cystic Fibrosis Carrier Testing: The Choice is Yours. (An educational videotape on cystic fibrosis testing). Baltimore: The Johns Hopkins University, 1992.

Faden RR et al (1994). Attitudes of Physicians and Genetics Professionals Toward Cystic Fibrosis Carrier Screening. Am J Med Genet, 50(1): 1-11.

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HUDSON, Kathy "National Black Leadership Conference on Genetics"
IMAGN! Increasing Minority Awareness of Genetics Now! Conference Report. October 2004. Genetics & Public Policy Center. Johns Hopkins University.

HUGHES-HALBERT, Chanita "Comparing Models of Pre-Test Education for BRCA1 Testing"
Hughes CA, Gomez-Caminero A, Bekendorf J et al (1997). Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Education and Counseling, 32: 51-62.

Lerman C (1997). Psychological aspects of genetic testing: Introduction to the Special Issues. Health Psychology, 16: 3-7.

Lerman C (1997). Translational Behavioral Research in Cancer Genetics. Preventative Medicine, 26: 565-69.

Lerman C, Biesecker B, Benkendorf JL, Kerner J, Gomez-Caminero A, Hughes C, Reed MM (1997). Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst, 89(2): 148-57. [PubMed]

Benkendorf JL, Reutenauer JE, Hughes CA et al (1997). Patients Attitudes About Autonomy and Confidentiality in Genetic Testing for Breast-Ovarian Cancer Susceptibility. Am J Med Genet, 73: 296-303.

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Croyle R, Lerman C. (1999). Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr, 25: 59-66.

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Glanz K, Grove J, Lerman C et al (1999). Correlates of Intentions to Obtain Genetic Counseling and Colorectal Cancer Gene Testing Among At-Risk Relatives from Three Ethnic Groups. Cancer Epidemiol Biomarkers Prev, 8(4): 329-336. [PubMed]

Tercyak KP, Streisand R, Peshkin BN, Lerman C (2000). Psychosocial impact of predictive testing for illness on children and families: Challenges for a new millennium. Journal of Clinical Psychology in Medical Settings, 7: 55-68.

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Tercyak KP, Lerman C, Peskin BN, Hughes C, Main D, Isaacs C, Schwartz MD (2001). Effects of Coping Style and Test Result on Anxiety among Women Participating in Genetic Counseling and Testing for Breast/Ovarian Cancer Risk. Health Psychology, 20: 217-22.

Tercyak KP, Peshkin BN, Streisand R, Lerman C (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10: 336-46.

Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D (2002). All in the Family: Evaluation of the process and content of sister's communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet, 107(2): 143-50.

Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D (2002). All in the Family: Evaluation of the process and content of sister's communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet, 107(2): 143-50.

Lerman C, Croyle RT, Tercyak P, Hamann H (2002). Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology, 70(3): 784-97.

"Care and Understanding: A Telephone Counseling Program for Women Who Have a BRCA1 or BRCA2 Gene Alteration." The Cancer Assessment and Risk Evaluation Program Care Kit. (Educational materials on (1) Managing Family Concerns, (2) Making Medical Decisions, (3) Emotional Responses to Genetic Testing, and (4) Strategies to Help Cope with Stressors Related to Genetic Test Results.)

Cella D., Hughes C., Peterman A., Chang C.H., Peshkin B.N., Schwartz M.D., Wenzel A., Lemke A., Marcus A., Lerman C. "A Brief Assessment of Concerns Associated with Genetic Testing for Cancer: The Multidimensional Impact of Cancer Risk Assessment (MICRA) Questionnaire." Health Psychology. (accepted for publication)

Hughes-Halbert C., Wenzel L, Lerman C et al (2004). Predictors of Participation in Psychosocial Telephone Counseling following Genetic Testing for BRCA1 and BRCA2 Mutations. Cancer Epidemiol Biomarkers Prev, 13(5): 875-81.

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IONNO, Sandra "SPUSA 1999 International Conference Genetic Portions"
Mind-full: A Brainsnack for Future Leaders with Ethical Appetites: Volume Two. Washington, DC: Student Pugwash USA, May 1999.

Science and Social Responsibility in the New Millennium: Conference Report. Washington, DC: Student Pugwash USA, June 1999.

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Higman, Susan M. "Science and Social Responsibility in the New Millennium: Evaluation of Student Pugwash USA's 20th Anniversary Conference and Measurement of the Organization's Impact on Participants (Final conference assessment)." Baltimore, MD: June 29, 2000.

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JAVITT, Gail "Assessing the Impact of DTC Genetic Testing to Inform Policy Development"
Aronson JD (2011). The Strengths and Limitations of South Africa's Search for Apartheid-Era Missing Persons. Int J Transit Justice, 5(2): 262-81.

JAYARATNE, Toby "Beliefs among Whites and African-Americans about Genetic Causes for Gender, Class and Race Differences: Social-Political Educational Implications"
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Jayaratne TE, Ybarra O, Sheldon JP, Brown TN, Feldbaum M, Pfeffer CA, Petty EM (2006). White Americans' Genetic Lay Theories of Race Differences and Sexual Orientation: Their Relationship with Prejudice toward Blacks, and Gay Men and Lesbians. Group Processes & Intergroup Relations, 9(1): 77-94.

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Cole ER, Jayaratne TE, Cecchi LA, Feldbaum MB, Petty EM. Vive La Difference? Genetic Explanations for Perceived Gender Differences in Nurturance. Sex Roles Springer Science. 57(3-4):211-22. 2007.

JONSEN, Albert "A Paradigm Approach to Ethical Problems in Genetics"
Durfy SJ (1993). Ethics and the Human Genome Project. Archives of Pathology and Laboratory Medicine, 117(5): 466-469.

Jonsen AR (1994). Genetic Testing, Individual Rights, and the Common Good In Campbell C, Lustig A, eds, Duties to Others (319p). Boston: Kluwer Academic.

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Jonsen AR (1996). The Impact of Mapping the Human Genome on the Patient Physician Relationship In Murray TH, Rothstein M, Murray R, eds, The Human Genome Project and The Future of Health Care (248p). Bloomington: Indiana University Press.

JUENGST, Eric "Anticipating Enhancement: Ethical, Legal and Social Issues"
Juengst ET (1997). Can Prevention be Distinguished from Enhancement in Genetic Medicine?. J Med Philos, 22: 125-142.

Whitehouse PJ, Juengst ET, Murray TH, Mehlman MJ (1997). Enhancing Cognition in the Intellectually Intact. The Hastings Center Report, 27: 14-23.

Juengst ET (1998). What Does Enhancement Mean? In Parens E, ed, Enhancing Human Traits: Ethical and Social Implications (pp 29-47). Washington, DC: Georgetown University Press.

Juengst ET, Walters L (1999). Ethical Issues in Human Gene Transfer Research In Friedman T, ed, The Development of Human Gene Therapy. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press.

Juengst ET (1999). Anticipating Enhancement: A Conceptual and Ethical Challenge for Gene Therapy Regulation In Nordgren A, ed, Gene Therapy and Ethics (pp 97-109). Uppsala: Acta Universitatis Upsaliensis.

Juengst, E.T. "Concepts of Disease after the Human Genome Project." p. 125-152, in Ethics and Values in Health Care on the Frontiers of the Twenty-First Century, S. Wear and James (eds.) (Bono Philosophy and Medicine Book Series, Volume ) Uppsala: Uppsala University Library, 1999.

Mehlman MJ (1999). How Will We Regulate Genetic Enhancement?. Wake Forest Law Review, 34(3): 671-714.

Mehlman MJ (1999). The Human Genome Project and the Courts: Gene Therapy and Beyond. Judicature, 83(3): 124-130.

Juengst MJ (2000). The Law of Above Averages: Leveling the New Genetic Enhancement Playing Field. Iowa Law Review, 85: 124-130.

Juengst, E.T. "Enhancement: Ethical Issues." in The Encyclopedia of Ethical, Legal and Political Issues in Biotechnology, T. Murray and M. Mehlman, (eds.) New York: John Wylie & Sons, 2000. (In press).

Mehlman, M.J. "Genetic Enhancement and the Regulation of Acquired Genetic Advantages." in The Encyclopedia of Ethical, Legal and Political Issues in Biotechnology, T. Murray and M. Mehlman, (eds.) New York: John Wylie & Sons, 2000. (In press).

Juengst, E.T. and E. Parens. "Germ-line Dancing: Definitional Considerations for Science Policy Makers." In Points to Consider Regarding Inherited Genetic Modifications in Human Beings, A. Chapman and M. Frankel (eds.) Washington, DC: AAAS. (In press).

JUENGST, Eric "Center for Genetic Research, Ethics, and Law (CGREAL)"
Hoffman S (2004). Is There a Place for 'Race' as a Legal Concept?. Arizona State Law Journal, 36(4): 1093-1159.

Juengst E, Ponsaran R (2004). Normal aging, disease prevention and medical ethics. Public Policy and Aging Report.

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Davis DS (2004). Genetic Research & Communal Narratives. Hastings Cent Rep, 34(4): 40-49. [PubMed]

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Hoffman S, Berg J (2005). The Suitability of IRB Liability. University of Pittsburgh Law Review, 67(2): 365-428.

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Davis D. Genetic Testing and Tort Actions. In Genetic Testing: Care, Consent, and Liability. N.F. Sharpe and R.F, eds. Carter. Hoboken, N.J. , Wiley-Liss: 107-127. 2006.

Juengst E (2006). Altering the human species? Misplaced essentialism in science policy In Rasko J, O'Sullivan G, Ankeny R, eds, The Ethics of Inheritable Genetic Modification: A Dividing Line? (pp 149-58). Cambridge: Cambridge University Press.

Juengst, E. and Goldenberg, A.: Genetic diagnostic, pedigree and screening research. In Emanuel, E. and Crouch, R. (eds.) The Oxford Textbook of Clinical Research Ethics. Oxford. 2006. [In Press]

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Marshall, P.: Ethical Issues in Research Design and Informed Consent in Resource Poor Countries. World Health Organization. 2006.

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Hoffman S, Podgurski A (2007). Securing the HIPAA Security Rule. Journal of Internet Law, 10(1).

Davis D. The changing face of misidentified paternity. Journal of Medicine and Philosophy. [In Press]

Dressler L (2007). Control and Use of Banked Human Specimens in Research. Biospecimen. Journal of Cancer Epidemiology, Prevention and Biomarkers, 16(2): 190-191. [PubMed]

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Juengst E. Annotating the Moral Map of Enhancement: Gene Doping, the Limits of Medicine and the Spirit of Sport. Ethics, Genetics and the Future of Sport: Implications of Genetic Modification Selection. ed. T Murray. Washington, DC, Georgetown University Press. [In Press]

Juengst E, Grankvist H (2007). Ethical Issues in Human Gene Transfer: A Historical Overview In Ashcroft R, ed, Principles of Health Care Ethics (pp 789-796). John Wiley and Sons.

Leppert M, Matsuda I, et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genetics. [In Press]

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Davis D (2007). A Thoughtful Look at Disability. Hastings Cent Rep, 54-55(2).

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Davis D. Religion, Genetics, and Sexual Orientation: A First Cut, Kennedy Institute of Ethics Journal (in press).

Fishman JR, Binstock RH, Lambrix M. Anti-Aging Science: The Emergence, Maintenance, and Enhancement of a Discipline, Journal of Aging Studies. In Press.

Berg J. Of Elephant and Embryos: A Proposed Framework for Legal Personhood. Hastings Law Journal, In Press. 2008.

Genetic diagnostic, pedigree and screening research. The Oxford Textbook on the Ethics of Clinical Research. E. Emanuel, Grady, C., Reidar, L Miller, F. Wendler, D. Oxford University Press. In Press.

Settersten RA Jr, Flatt M, Ponsaran R. The Lure and the Lair of Anti-Aging Research: Top Scientists, a Contested Field, and the Struggle for Legitimacy. Journal of Aging Studies. In Press.

Workman ML, Winkelman C. (accepted for publication, anticipated out in August). The Genetics of Pulmonary Disease. Critical Care Nursing Clinics of North America.

JUENGST, Eric "Enhancement Ethics and the Molecular Genetics of Aging"
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JUENGST, Eric "Enhancement: Professional Ethical and Public Policy Issues"
Juengst ET (2002). Growing pains: Bioethical perspectives on growth hormone replacement research. J Anti-Aging Med, 5(1): 73-79.

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KAHN, Jeffrey "Genetics & Disability Insurance Ethics, Law & Policy"
Kahn JP, Wolf SM (eds). Genetic Testing and Disability Insurance. JLME, Special Supplement 35:2; 90p. Summer 2007.

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Kelly SE (2002). The new genetics meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky. Critical Public Health, 12(2): 1-18.

Kelly S.E. "The 'new genetics' meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky." Critical Public Health (accepted for special issue, Winter 2002)

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Kelly SE (2005). A different light - Examining, impairment through parent narratives of childhood disability. Journal of Contemporary Ethnography, 34(2): 180-205.

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King MC (1991). An Application of DNA Sequencing to a Human Rights Problem. .

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KINNEY, Anita "BRCA1 Testing in a Large African American Kindred"
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Kinney AY, Emery G, Dudley WN, Croyle RT (2002). Screening behaviors among African American women at high risk for breast cancer: Do beliefs about God matter?. Oncol Nurs Forum, 29: 835-843.

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Klitzman R (2008). Views of the process and content of ethical reviews of HIV vaccine trials among members of US Institutional Review Boards and South African Research Ethics Committees. Dev World Bioeth, 8(3): 207-218. [PubMed]

Klitzman, R and Sauer, M. Should egg donors in stem cell research be paid, and if so, how much? Reproductive BioMedicine Online, 18(5):603-608.

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Appelbaum P, Lidz C, Klitzman R (2009). Voluntariness of Consent to Research: A Preliminary Empirical. IRB, 31(6): 10-14.

Kleinert, K, Rifai, H, and Klitzman, R. Reporting of IRB approval in journal articles that present research conducted in the developing world. Developing World Bioethics, doi: 10.1111/j. 1471-8847. 2011 [PubMed]

Klitzman, R. Genetic Discrimination Post-GINA: Subtle and Indirect Discrimination. Journal of Genetic Counseling. [In Press]

Fisher, C. F., Chin, L., Klitzman, R. The Marketing of Neuromarketing: Ethical and Policy Considerations. Harvard Review of Psychiatry. [In press]

KLITZMAN, Robert "Views of Privacy of Genetic Information"
Klitzman R, Kirshenbaum S, Kittel L et al (2004). Intricacies and Inter-relationships Between HIV Disclosure and HAART: A Qualitative Study. AIDS Care, 16(5): 628-640. [PubMed]

Klitzman R, Kirshenbaum SB, Kittel L, Morin SF, Daya S, Mastrogiacomo M, Rotheram-Borus MJ (2004). Naming Names: Perceptions of Name-Based HIV Reporting, Partner Notification, and Criminalization of Non-disclosure Among Persons Living With HIV. Sexuality Research and Social Policy, 1(3): 38-57. [NLM Gateway]

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KNOPPERS, Bartha "The First International Conference on DNA Sampling & Human Genetic Research: Ethical, Legal and Policy Aspects"
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KOENIG, Barbara "A Case-Based Ethics Curriculum for the Biotech Industry"
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KUPPERMANN, Miriam "Optimizing Prenatal Testing Decision-Making"
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Kuppermann, M., D. Feeny, E. Gates, S. Posner, B. Blumberg, A.E. Washington. "Preferences of Women Facing a Prenatal Diagnostic Choice: Implications for Genetic Testing Guidelines." Medical Decision Making. 1996; 16: 466. (Abstract)

Knoppers BM, Laberge CM, Hirtle M eds (1997). Human DNA: Law and Policy The Hague, The Netherlands: Kluwer Law International.

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LAPHAM, E. Virginia "Human Genome Education Model Program"
The HuGEM Project. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. (Six videos: titles listed below)

• "The HuGEM Project: Overview of the Human Genome Project and Its Ethical, Legal and Social Issues." (19 minutes)
• "The HuGEM Project: Genetic Testing Across the Lifespan" (30 minutes)
• "The HuGEM Project: Issues of Genetic Privacy and Discrimination" (45 minutes)
• "The HuGEM Project: Opportunities and Challenges of the Human Genome Project" (24 minutes)
• "The HuGEM Project: Working Together to Improve Genetic Services" (28 minutes)

Palincsar, L. et al. Human Genome Education Model Project Video Manual. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. Georgetown University. 1996.

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LEA, Dale "A Practice-Based Genetics Curriculum for Nurse Educators"
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LEE, Sandra "Distributive Justice in Human Genetic Variation Research"
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Lee SS, Koenig BA (2003). Racial Profiling of DNA Samples: Will it Affect Scientific Knowledge About Genetic Variation In Knoppers B, Ed., Populations and Genetics: Legal and Socio-Ethical Perspectives (231-244). Leiden: Martinus Nijhoff Publishers.

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Lee SS-J. Identifying 'Race' in the New Genetics: Bio-Banks of a Kind. Patterns of Prejudice. Ed. S.L. Gilman. 40(4,5): 443-460. 2006.

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Lee SS-J. Racial Realism: Reframing Disparity into Difference. In Revisiting Race in a Genomic Age. Eds. B Koenig, SS-J Lee and S Richardson. New Brunswick: Rutgers University Press. [In Press]

Lee SS, Mountain J, Koenig B, Altman R, Brown M, Camarillo A, Cavalli-Sforza L, Cho M, Eberhardt J, Feldman M, Ford R, Greely H, King R, Markus H, Satz D, Snipp M, Steele C, Underhill P (2008). The Ethics of characterizing Difference: Guiding Principles on Using Racial Categories in Human Genetics. Genome Biology, 9(7): 404.1-4. [PubMed Central]

Lee SS, Mudaliar A (2009). Racing Forward: the Genomics and Personalized Medicine Act. Science, 323(5912): 342. [PubMed]

Caulfield T, Fullerton SM, Ali-Khan SE, Arbour L, Burchard EG, Cooper RS, Hardy BJ, Harry S, Hyde-Lay R, Kahn J, Kittles R, Koenig BA, Lee SS-J, Malinowski M, Ravitsky V, Sankar P, Scherer SW, Séguin B, Shickle D, Suarez-Kurtz G, Daar AS (2009). Race and Ancestry in Biomedical Research: Exploring the Challenges. Genome Medicine, 1(1): 8.1-8.7. [PubMed Central]

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MEISLER, Miriam "Genome Center Education Program"
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MILLER, Suzanne "Facilitating Well-Informed Decisions for BRCA Testing"
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Miller SM, Diefenbach MA (2000). Stress and coping in the cancer context In Lewis M, Haviland J, (Eds.), Handbook of Emotion: Second Edition. New York, NY: The Guilford Press.

Miller SM, Diefenbach MA, Kruus L, Ohls L, Hanks G, Bruner D, Baffoe-Bonnie A, Engstrom PE (2001). Psychological and screening profiles of first degree relatives of prostate cancer patients. Journal of Behavioral Medicine, 24: 247-258.

Hurley KE, Miller SM, Costalas JW, Daly MB (2001). Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. Journal of Women's Health and Gender-Based Medicine, 10: 189-199.

Miller SM, Fang CY, Diefenbach MA, Bales C (2002). Tailoring psychosocial interventions to the individual's health information processing style: The influence of monitoring versus blunting in cancer risk and disease In Baum A, Andersen B, (Eds.), Psychosocial interventions in cancer. Washington D.C.: American Psychological Association.

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Sorenson JR, Cheuvront B (1993). The Human Genome Project and Health Behavior and Health Education Research. Health Education Research, 8(4): 589-593.

Callanan NP et al (1995). CF Carrier Testing: Experience of Relatives. J Genet Couns, 4(2): 83-95.

Sorensen JR et al (1996). Proband and Parent Assistance in Identifying Relatives for Cystic Fibrosis Carrier Testing. Am J Med Genet, 63(3): 419-425.

Sorenson JR et al (1997). Acceptance of Home and Genetic Clinic Cystic Fibrosis Carrier Education and Testing by First, Second, and Third Degree Relatives of CF Patients. Am J Med Genet, 70(2): 121-129.

Cheuvront B, Sorenson JR, Callanan NP et al (1998). Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives. Am J Med Genet, 75(5): 461-468.

Callanan NP, Cheuvront BJ, Sorenson JR (1999). CF Carrier testing in a high risk population: Anxiety, risk perceptions, and reproductive plans of carrier by "non-carrier" couples. Genet Med, 1(7): 323-7.

Newman JE, Sorenson JR, DeVellis BM, Cheuvront B (2002). Gender differences in psychosocial reactions to cystic fibrosis carrier testing. Am J Med Genet, 113(2): 151-157.

SORENSON, James "An Experimental Study to Improve Risk/Benefit Appraisal"
Sorenson JR, Lakon C, Spinney T, Jennings-Grant T (2004). Assessment of a decision aid to assist genetic testing research participants in the informed consent process. Genet Test, 8(3): 336-346.

Griffith JM, Sorenson JR, Jennings-Grant T, Fowler B. "Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings." Patient Education and Counseling. (In pressavailable online December 2004)

SORENSON, James "Hemophilia 'A' Carrier Testing--Acceptance and Reactions"
Sorenson JR, Jennings-Grant T, Newman J. "Communication about carrier testing within hemophilia A families." American Journal of Medical Genetics Part C-Seminars in Medical Genetics. MAY 15 2003; 119C (1): 3-1

SPICER, Paul "The Promises and Pitfalls of Native Genetic Research"
Buchwald D, Mendoza-Jenkins V, Croy C, McGough H, Bezdek M, Spicer P (2006). Attitudes of urban American Indians and Alaska Natives regarding participation in research. J Gen Intern Med, 21(6): 648-51. [PubMed]

STOWE, Matthew "A Framework for Disability Perspectives on HGP"
Stowe MJ, Turnbull HR, Pence R, Rack J, Schrandt S, Laub L (2007). The Importance of Attitudes Toward and Understanding of Disability and Science in the Age of Genetics. Research and Practice for Persons with Severe Disabilities, 32(3): 190-206.

Stowe M, Turnbull R, Schrandt M, Rack J (2007). Looking to the Future: Intellectual and Developmental Disabilities in the Genetics Era. Journal on Developmental Disabilities, 13(2): 1-64.

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TEICH, Albert "Ethical and Legal Implications of Genetic Testing"
Conference Proceedings: The Genome, Ethics, and the Law: Issues in Genetic Testing. Washington, DC: AAAS (publication Number 92-11S), 1992. 124p.

Frankel M, Teich A (1993). Ethical and Legal Issues in Pedigree Research Washington, DC: AAAS 216p..

Frankel M, Teich A eds (1994). The Genetic Frontier: Ethics, Law and Policy Washington, DC: AAAS 240p..

TERCYAK, Kenneth "Parent Communication of BRCA1/2 Test Results to Children"
Tercyak KP, Peshkin BN, Demarco TA et al (2007). Information Needs of Mothers Regarding Communicating BRCA1/2 Cancer Genetic Test Results to Their Children. Genet Test, 11(3): 249-255. [PubMed]

Peshkin BN, DeMarco TA, Garber JE et al (2008). Brief Assessment of Parents' Attitudes Toward Testing Minor Children for Hereditary Breast/Ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). J Pediatr Psychol. [PubMed]

DeMarco TA, Peshkin BN, Valdimarsdottir HB, Patenaude AF, Schneider KA, Tercyak KP (2008). Role of Parenting Relationship Quality in Communicating about Maternal BRCA1/2 Genetic Test Results with Children. J Genet Couns, 17: 283-287. [PubMed Central]

O'Neill SC, Peshkin BN, Luta G, Abraham A, Walker LR, Tercyak KP (2010). Primary care providers' willingness to recommend BRCA1/2 testing to adolescents. Familial Cancer, 9(1): 43-50. [PubMed]

Tercyak KP, Alford SH, Emmons KM, Lipkus IM, Wilfond BS, McBride CM (2011). Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk. Pediatrics, 127(5): 288-295. [PubMed]

TEXTER, Cardie "The Human Genome Project: Human and Scientific Dimensions"
MCET. The Human Genome Project: Exploring the Human and Scientific Dimensions. (Series of 7 Videos--core of bi-weekly elective biology course). Boston: MCET.

Blatt, R. "The Human Genome Project: Exploring the Scientific and Humanistic Dimensions." (Curriculum Materials). Boston: MCET.

Additional MCET Video Products:

• "Fragile Pressure" Fragile X. December 1993. (Video length: 18:26)
• Human Genome Project Cystic Fibrosis Case Study: In Whose Hands?. (Video length: 18:32)
• Human Genome Teachers Institute Studio. (Video)
• "Shadows on the Screen": Human Genome Project. (Video length: 17:30)
• "A Test of Time" Huntington's Disease. December 1993. (Video length: 16:33)

TROTTIER, Ralph "Impact of HGP Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical, and Legal Issues"
Crandall LA (1992). Biomedical Ethics: Challenges from New Technologies In Building Bridges: Strategies for the Future, Proceedings of the 14th Annual Meeting of the Society for Healthcare Planning and Marketing. Chicago: American Hospital Association.

Crandall LA (). Health Care Reform and Payment for 'Non-Beneficial' Medical Interventions at the End of Life: Is There a Policy Solution? In Health Care Crisis? The Search for Answers (pp. 123-34). Frederick, Maryland: University Publishing Group.

James DCS et al (1995). Professional Preparation of Individuals Who Provide Genetic Counseling Services. J Genet Couns, 4: 49-63.

James DCS et al (1995). Roles of Physicians, Genetic Counselors, and Nurses in the Genetic Counseling Process. J Fla Med Assoc, 82(5): 403-10.

Phoenix DA et al (1995). Sickle Cell Screening Policies as Portent: How the Human Genome Project Affects Public-Sector Genetic Services?. J Nat Med Assoc, 87: 807-12.

Trottier RW (1996). Genetics In Public Health: Implications of Genetic Screening/Counseling in Rural/Culturally Diverse Populations In Aronowitz S, Martinsons B, Menser M, Eds., Technoscience and Cyberculture. New York: Routledge Press.

Crandall, L.A. "Genetic Testing and Managed Care: Balancing Individual, Family, and Corporate Interests" in Resources, Rationing, and Responsibility: Ethical Issues in Managed Care (Continuing Education Conference Papers). Indianapolis; Indiana University School of Medicine, Division of Continuing Education, 1996.

Trottier, R.W. and L.A. Crandall. Public Sector Genetic Services: Current Status and Potential Issues Raised by the Human Genome Project. Final Report, Morehouse School of Medicine; Atlanta: October 1996.

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WACHBROIT, Robert "Reassessing Health, Normality, and Confidentiality"
Wasserman D (1993). Disability, Discrimination, and Fairness. Report from the Institute for Philosophy & Public Policy, 13: 7-12.

Wachbroit R (1993). Rethinking Medical Confidentiality: The Impact of Genetics. Suffolk University Law Review, 27(4): 1391-1410.

Wulfsberg EA et al (1994). ;Alpha-Antitrypsic Deficiency: Impact of Genetic Discovery on Medicine and Society. JAMA, 271(3): 217-222.

Hoffmann DE, Wulfsberg EA (1995). Testing Children for Genetic Predispositions: Is it in Their Best Interest?. J Law Med Ethics, 23(4): 331-344.

WAISBREN, Susan "Expanded Newborn Screening for Metabolic Disorders"
Albers S., Levy H.L. "One more thought on sudden infant death syndrome." Pediatrics 2001; 107: 809 (letter).

Albers S, Marsden D, Quackenbush E, Stark AR, Levy HL, Irons M (2001). Detection of neonatal CPT II deficiency by expanded newborn screening. Pediatrics, 107(e103): 1-4.

Albers S, Levy HL, Irons M (2001). Compound heterozygosity in four asymptomatic siblings with medium-chaim acyl-CoA dehydrogenase deficiency. J Inherit Metab Dis, 24: 417-8.

Waisbren S.E., Albers S., Amato S. et al. "Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress." JAMA. November 19, 2003; 290(19); 2564-2572. (Holtzman N.A. "Expanding Newborn Screening: How Good Is the Evidence?" Editorial, 2606-2608).

Website: New England Consortium of Metabolic Programs
Highlighted presentations available on the website include: "Newborn Screening: A New Era," by Harvey L. Levy;
"Benchmarks for Fairness in Newborn Screening for Metabolic Disorders," by Susan Waisbren; and "Genetics and Newborn Screening Collaborative," by Thomas Brewster.

Waisbren, S.E., Levy, H.L. "Expanded screening of newborns for genetic disorders." JAMA. 2004; 18;291(7): 820-1; author reply 821. [PubMed]

Waisbren SE, Rones M, Read CY, Marsden D, Levy HL (2004). Brief report: Predictors of parenting stress among parents of children with biochemical genetic disorders. J Pediatr Psychol, 29(7): 565-70. [PubMed]

Gurian EA, Kinnamon DD, Henry JJ, Waisbren SE (2006). Expanded newborn screening for biochemical disorders: The effect of a false-positive result. Pediatrics, 117(6): 1915-21. [PubMed]

WALTERS, LeRoy "DNA Patent Policies at Academic Institutions"
Pressman L, Burgess R, Cook-Deegan RM, McCormack SJ, Nami-Wolk I, Soucy M, Walters L (2006). he licensing of DNA patents by US academic institutions: an empirical survey. Nat Biotechnol, 24(1): 31-39. [PubMed]

WALTERS, LeRoy "National Information Resource on Ethics and Human Genetics"
United States. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Splicing Life: a Report on the Social and Ethical Issues of Genetic Engineering with Human Beings. Washington, DC: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982. 126p. Full text digitized and provided at: http://bioethics.georgetown.edu/pcemr/splicinglife.pdf, also available at: http://www.bioethics.gov/reports/past_commissions/splicinglife.pdf

United States. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Screening and Counseling for Genetic Conditions: a Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. Washington, DC: U.S. Government Printing Office, 1983. 122p. Full text digitized and provided at: http://bioethics.georgetown.edu/pcemr/geneticscreening.pdf, also available at: http://www.bioethics.gov/reports/past_commissions/geneticscreening.pdf

Durfy, S.J. and A.E. Grotevant. "The Human Genome Project." Scope Note 17. Kennedy Institute of Ethics Journal. December, 1991; 1(4): 347-362.

McCarrick, P.M. "Genetic Testing and Genetic Screening." Scope Note 22. Kennedy Institute of Ethics Journal. September 1993; 3(3): 333-354.

Coutts, M.C. "Human Gene Therapy." Scope Note 24. Kennedy Institute of Ethics Journal. March 1994; 4(1): 68-83.

Walters L, Kahn TJ (1995). Bibliography of Bioethics, Volume 21 Washington, DC: Kennedy Institute of Ethics, Georgetown University 783p..

Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 22." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1995. 761p.

Coutts MC, McCarrick PM (1995). FORMAT"Eugenics.. Kennedy Inst Ethics J, 5(2): 163-178.

Walters L, Kahn TJ eds (1997). Bibliography of Bioethics, Volume 23 Washington, DC: Kennedy Institute of Ethics, Georgetown University 774p..

Darragh M, McCarrick PM (1997). Genetics and Ethics: Selections from Updated Scope Notes. Kennedy Inst Ethics J, 7(3): 299-318.

Walters L, Kahn TJ eds (1998). Bibliography of Bioethics, Volume 24 Washington, DC: Kennedy Institute of Ethics, Georgetown University 766p..

Bioethics Information Retrieval Project. "Bioethics Thesaurus." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1994-1999, annual.

Walters L, Kahn TJ eds (1999). Bibliography of Bioethics, Volume 25 Washington, DC: Kennedy Institute of Ethics, Georgetown University 752p..

WALTERS, LeRoy. National Information Resource on Ethics & Human Genetics Web site. Includes: Genetics and Ethics database, QuickBibs, Digital Collection Project, Organizations, Search Request Form.

Walters L, Kahn TJ eds (2000). Bibliography of Bioethics, Volume 26 Washington, DC: Kennedy Institute of Ethics, Georgetown University 740p..

Bishop, L.J., M. Darragh, D. Goldstein, L. Huttlinger, A. Nolen. "Basic Resources in Bioethics: 1996-1999." Scope Note 37. Kennedy Institute of Ethics Journal. 2000 March; 10(1): 81-102.

Poland, S.C. "Genes, Patents, and Bioethics - Will History Repeat Itself?" Scope Note 39. Kennedy Institute of Ethics Journal. September 2000; 10(3): 265-281.

Walters L, Kahn TJ eds (2001). Bibliography of Bioethics, Volume 27 Washington, DC: Kennedy Institute of Ethics, Georgetown University 675p..

Walters L, Kahn TJ, Goldstein D eds (2002). Bibliography of Bioethics, Volume 28 Washington, DC: Kennedy Institute of Ethics, Georgetown University 765p..

Bishop, L.J. and S.C. Poland. "Bioethics and Cloning, Part I." Scope Note 41. Kennedy Institute of Ethics Journal. 2002 September; 12(3): 305-324.

Poland SC, Bishop LJ (2002). "Bioethics and Cloning, Part II." Scope Note 42. Kennedy Inst Ethics J, 12(4): 391-407.

Walters L, Kahn TJ, Goldstein D (2003). Bibliography of Bioethics, Volume 29 Washington, DC: Kennedy Institute of Ethics, Georgetown University 737p..

Huttlinger, L.F., ed. "New Titles in Bioethics, 1994 to present." Quarterly and annual. From July 2003.

Bishop, L.J., and A.L. Nolen. "Animals in Science and Education." Co-published simultaneously in The Reference Librarian No. 86, 2004, p. 57-70; and: Kistler, John M., ed. "Animals Are the Issue: Library Resources on Animal Issues." Binghamton, NY: The Haworth Press, 2004; pp. 57-70.

Walters L, Kahn TJ, Goldstein D eds (2004). Bibliography of Bioethics, Volume 30 Washington, DC: Kennedy Institute of Ethics, Georgetown University 571p..

"Bioethics Searchers Guides: Using Databases of the National Library of Medicine and National Reference Center for Bioethics Literature." Washington, DC: Kennedy Institute of Ethics, Georgetown University, May 2004. 171 p.

WASSERMAN, David "Genetic Factors in Crime--Findings, Uses & Implications"
Wasserman D (1996). Research into Genetics and Crime: Consensus and Controversy. Politics Life Sci, 15(1): 107-109.

WASSERMAN, David "Genetic Testing, Disabilities, and the Quality of Life"
Wasserman D, Strudler A (2003). Can a Nonconsequentialist Count Lives. Philosophy & Public Affairs, 31(1): 71-94.

Wasserman D, Bickenbach J, Wachbroit R eds (). Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability New York, New York: Cambridge University Press 273 p..

WERTZ, Dorothy "Ethics and Genetics: A Survey of Approaches in the US and Canada"
Wertz DC (1992). Ethical and Legal Implications of the New Genetics: Issues for Discussion. Soc Sci Med, 35(4): 495-50.

Wertz D.C, JC Fletcher JC (1993). A Critique of Some Feminist Challenges to Prenatal Diagnosis. Journal of Women's Health, 2(2): 173-188.

Wertz DC (1993). Provider Biases and Choices: The Role of Gender. Clinical Obstetrics and Gynecology, 36(3): 521-531.

Wertz DC, Fletcher JC (1993). Feminist Criticism of Prenatal Diagnosis: A Response. Clinical Obstetrics and Gynecology, 36(3): 541-567.

Wertz DC (1994). Provider Gender and Moral Reasoning: The Politics of an Ethics of Care. J Genet Couns, 3(2): 95-112.

Wertz DC et al (1994). Testing Healthy Children and Adolescents; Recommendations for Avoiding Harm. The Genetic Resource, 8(2): 16-20.

Wertz DC et al (1994). Genetic Testing for Children and Adolescents: Who Decides?. JAMA, 272(11): 875-881.

Wertz DC (1995). Professional Perspectives: A Survey of Canadian Providers. Health Law Journal, 3: 59-130.

Wertz DC (1995). Ethics In Duckett S, Ed., Pediatric Neuropathology. Baltimore: Williams & Wilkins.

Wertz DC, Reilly PR (1997). Laboratory Policies and Practices for the Genetic Testing of Children: A Survey of the Helix Network. Am J Hum Genet, 61: 1163-1168.

Wertz DC (1998). The Difficulties of Recruiting Minorities to Studies of Ethics and Values in Genetics. Community Genet, 1: 175-179.

Wertz DC (1998). Ethical Issues in Pediatric Genetics: Views of Geneticists, Parents, and Primary Care Physicians. Health Law Journal, 6: 1-42.

Wertz DC (1999). Genetic Discrimination: Results of a Survey of Genetics Professionals, Primary Care Physicians, Patients, and Public. Health Law Review, 7(3): 7-8.

Wertz DC (1999). Patient and Professional Views on Autonomy: A Survey in the United States and Canada. Health Law Review, 7(3): 9-10.

Wertz DC (2000). Drawing Lines: Notes for Policymakers In Parens E, Asch A, eds., Prenatal Testing and Disability (261-287). Washington, DC: Georgetown University Press.

WERTZ, Dorothy "Geneticists Approach Ethics: An International Survey"
Wertz DC, Fletcher JC (1993). Proposed: An International Code of Ethics for Medical Genetics. Clin Genet, 44(1): 37-43.

Wertz DC, Fletcher JC (1993). Geneticists Approach Ethics: An International Survey. Clin Genet, 43(2): 104-110. [PubMed]

Wertz DC (1996). Opinions des geneticiens de 37 pays sur la preselection du sexe. Sociologie et societes, XXVIII(2): 77-92.

Wertz DC (1997). International Perspectives on Privacy and Access to Genetic Information. Microb Comp Genomics, 2(1): 53-61.

Cohen PE, Wertz DC, Nippert I, Wolff G (1997). Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists. J Genet Couns, 6(1): 61-80.

Wertz DC (1997). Society and the Not-so-New Genetics: What Are We Afraid of? Some Future Predictions From a Social Scientist. The Journal of Contemporary Health Law and Policy, 13: 299-346.

Mao X, Wertz DC (1997). China's Genetic Services Providers' Attitudes Towards Several Ethical Issues: A Cross-Cultural Survey. Clin Genet, 52: 100-109.

Wertz DC (1997). Is There a Women's 'Ethic' in Genetics: A 37-Nation Survey of Providers. JAMWA, 52(1): 33-38.

Wertz DC, Fletcher JC (1998). Ethical and Social Issues in Prenatal Sex Selection: A Survey on Geneticists in 37 Nations. Soc Sci Med, 46(2): 255. []

Wertz, D.C. "Genetic Counseling in Mexico." American Journal of Medical Genetics. [Editorial Comment] 1998; 75: 424-425.

Lisker R, Carnevale A, Villa JA, Armendares S, Wertz DC (1998). Mexican geneticists' opinions on disclosure issues. Clin Genet, 54: 321-329.

Wertz DC (1998). Eugenics Is Alive and Well: A Survey of Genetic Professionals around the World. Science in Context, 11(3-4): 100-109.

Wertz DC (1998). International Perspectives In Clark AJ, Ed., The Genetic Testing of Children. Oxford: BIOS Scientific Publishers.

Wertz DC (1998). International Research in Bioethics: The Challenges of Cross-Cultural Interpretation In DeVries, Subedi J, eds., Bioethics and Society. Upper Saddle River, New Jersey: Prentice Hall.

Wertz DC (1999). Patients' and Professionals' Views on Autonomy, Disability, and "Discrimination": Results of a 36-Nation Survey In Williams-Jones B, Caulfield T, eds., The Commercialization of Genetic Research. New York: Plenum Press.

Wertz DC (). International Research in Bioethics: The Challenges of Cross-Cultural Interpretation In DeVries R, Subedi J, eds., Bioethics and Society: Constructing the Ethical Enterprise (145-165). New Jersey: Prentice Hall.

Wertz, D.C. "Views of Chinese Medical Geneticists: How they Differ from 35 Other Nations." To appear in: Proceedings of the German Institute for Asian Studies

Wertz DC (2000). Emerging Risks of Genetic Testing. Risk Management Foundation of the Harvard Medical Institutions Forum.

Wertz D., Fletcher J., Nippert I., Wolff G., Ayme S. "Has Patient Autonomy Gone too Far? Geneticists' Views in 36 Nations." The American Journal of Bioethics. 2002; 2(4) In Focus.

Wertz DC (2002). Testing Children and Adolescents In Burley J, Harris J, eds., A Companion to Genethics (92-113). Malden, Massachusetts: Blackwell Publishers.

Wertz DC, Knoppers BM (2002). Serious Genetic Disorders: Can or Should They Be Defined?. Am J Med Genet, 108: 29-35.

WIKLER, Daniel "Human Genome Research in an Interdependent World"
Capron, A. "Human Genome Research in an Interdependent World." Kennedy Institute of Ethics Journal. September 1991. (Consensus Report including a proposal for Coordination of International ELSI issues by HUGO.)

WILKINSON, Susann "Biotechnology and the Diagnosis of Genetic Disease"
Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. Final Report. Washington, DC: Georgetown University Medical Center, August 1991. (Consensus Report on FDA's role in regulation of genetic technology.)

WOLF, Susan "Managing Incidental Findings in Human Subjects Research"
Wolf SM, Paradise J, Nelson CA, Kahn JP, Lawrenz F eds (2008). Symposium: Incidental Findings in Human Subjects Research: From Imaging to Genomics. J Law Med Ethics, 36(2): 209-435.

Wolf, SM, Lawrenz, FP, Nelson, CA et al (2008). Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. J Law Med Ethics, 36(2): 219-248. [PubMed]

Richardson HS (2008). Incidental Findings and Ancillary-Care Obligations. J Law Med Ethics, 36(2): 256-270. [PubMed]

Wolf SM (2008). Introduction: The Challenge of Incidental Findings. J Law Med Ethics, 36(2): 216-218. [PubMed]

Van Ness B (2008). Genomic Research and Incidental Findings. J Law Med Ethics, 36(2): 292-297. [PubMed]

Siddiki H, Fletcher JG, McFarland B et al (2008). Incidental Findings in CT Colonography: Literature Review and Survey of Current Research Practice. J Law Med Ethics, 36(2): 320-331. [PubMed]

Wilfond BS, Capenter KJ (2008). Incidental Findings in Pediatric Research. J Law Med Ethics, 36(2): 332-340. [PubMed]

Parker LS (2008). The Future of Incidental Findings: Should They be Viewed as Benefits?. J Law Med Ethics, 36(2): 341-351. [PubMed]

Milstein AC (2008). Research Malpractice and the Issue of Incidental Findings. J Law Med Ethics, 36(2): 356-360. [PubMed]

Wolf SM, Paradise J, Caga-anan C (2008). The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties. J Law Med Ethics, 36(2): 361-383. [PubMed]

Lawrenz F, Sobotka S (2008). Empirical Analysis of Current Approaches to Incidental Findings. J Law Med Ethics, 36(2): 249-255. [PubMed Central]

Cho MK (2008). Understanding Incidental Findings in the Context of Genetics and Genomics. J Law Med Ethics, 36(2): 280-85. [PubMed Central]

Nelson CA (2008). Incidental Findings in Magnetic Resonance Imaging (MRI) Brain Research. J Law Med Ethics, 36(2): 315-319. [PubMed Central]

Illes J, Chin VN (2008). Bridging Philosophical and Practical Implications of Incidental Findings in Brain Research. J Law Med Ethics, 36(2): 298-304. [PubMed Central]

Miller FG, Mello MM, Joffe S (2008). Incidental Findings in Human Subjects Research: What Do Investigators Owe Research Participants?. J Law Med Ethics, 36(2): 271-279. [PubMed Central]

Orme NM, Fletcher JG, Siddiki HA et al (2010). Incidental Findings in Imaging Research Evaluating Incidence, Benefit, and Burden. Archives of Internal Medicine, 170(17): 1525-1532. [PubMed]

Fabsitz RR, McGuire A, Sharp Richard R et al (2010). Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group. Circulation-Cardiovascular Genetics, 3(6): 574-580. [PubMed]

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ZABORSKY, Oskar "An Evaluation of the Application of DNA Technology in Forensic Science"
National Research Council. "DNA Technology in Forensic Science." Washington, D.C.: National Academy Press, 1992. 185p.

ZALLEN, Doris "The Human Genome Project: A Choices and Challenges Forum"
"The Human Genome Project: A Choices and Challenges Forum." Blacksburg, Virginia: Virginia Polytechnic Institute, April 1992. (Transcript and Videotape of Plenary session)

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Other ELSI Program Activities

"NIH-DOE ELSI Working Group Task Force on Genetics and Insurance (ITF)"
Project Date: May 1991 to May 1993

• NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Genetic Information and Health Insurance: Report of the Task Force on Genetic Information and Insurance. May 1993: NIH Publication No. 93-3686.

"Pre-symptomatic Testing for P53 Mutations"
Two conferences held May 8-9 and November 19, 1991 on the NIH Campus in Bethesda, Maryland. (Co-sponsored by NCI.)

• Li, F.P., J.E. Garber, S.H. Friend et al. "Recommendations on Predictive Testing for Germ Line p53 Mutations Among Cancer-Prone Individuals." Journal of the National Cancer Institute. August 5, 1992; 84(15): 1156-1160.

"NIH Cystic Fibrosis Studies Consortium (CFSC) and Consensus Development Conference"
Project Start Date: 9/30/91. Conference Date: April 14-16, 1997.

• Love, C.B. and E.J. Thomson. "Genetic Testing for Cystic Fibrosis: January 1989 through February 1997. [nlm.nih.gov] " Current Bibliographies in Medicine 97-2 . Bethesda, Maryland: National Library of Medicine, March 1997. 78p.
• Genetic Testing for Cystic Fibrosis [od.nih.gov]. NIH Consensus Statement 1997. April 14-16; 15(4): 1-37.

"Reproductive Genetic Testing: Impact on Women"
Conference held November 21-23, 1991, NIH campus, Bethesda, Maryland.

• Thomson, E., K. Rothenberg et al. "NIH Workshop Statement: Reproductive Genetic Testing: Impact on Women." American Journal of Human Genetics. November 1992; 51: 1161-1163.
• Evans, M., K. Rothenberg and E. Thomson, eds. "Reproductive Genetic Testing: Impact Upon Women." Fetal Diagnosis and Therapy. April 1993: 8(supplement).
• Rothenberg, K. and E. Thompson. Women and Prenatal Testing: Facing the Challenges of Genetic Technology. Columbus, Ohio: Ohio State University Press, 1994.

"Human Subjects in Genetics Research Involving Families: Points to Consider."
Conference held in 1992 on the NIH Campus in Bethesda, Maryland.
(Co-Sponsored by OPRR and NIMH)

• "Human Genetic Research." OPRR 1993 Protecting Human Research Subjects Institutional Review Board Guidebook. 1993: Chapter 5 (Section H); 42-63.

"NCHGR/CDC Informed Consent for Genetics Research Using Stored Tissue Samples"
Meeting held July 7 and 8, 1994 on the NIH campus in Bethesda, Maryland.
(Co-sponsored by CDC)

• Clayton, E.W., K.K. Steinberg, M.J. Khoury et al. "Informed Consent for Genetic Research on Stored Tissue Samples." JAMA. December 13, 1995; 274(22): 1786-1792.

"NIH Cancer Genetic Studies Consortium (CGSC)""
Project Start Date: 9/30/94

• Wilfond, B., K. Rothenberg, E. Thomson and C. Lerman "Ethical and Health Policy Issues in Cancer Genetic Testing." The Journal of Law, Medicine and Ethics. 1997; 25: 243-51.
• Burke, W., G. Petersen, P. Lynch et al. "Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to Cancer: I. Hereditary NonPolyposis Colon Cancer." JAMA, March 19, 1997; 277(11): 915-919.
• Burke, W., G. Petersen, P. Lynch et al. "Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to Cancer: II. BRCA1 and BRCA2." JAMA, March 26, 1997; 277(12): 997-1003.
• Geller, G., J.R. Botkin, M.J. Green et al. "Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent." JAMA, May 14, 1997; 277(18): 1467-1474.
• Bowen, D.J., A. Farkas and S.W. Vernon. "Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public." 326-328.
• Daly, M., J. Farmer, C. Harrop-Stein et al. "Exploring Family Relationships in Cancer Risk Counseling Using the Genogram." 393-398.
• Smith, K.R., J.A. West, R.T. Croyle and J.R. Botkin. "Familial Context of Genetic Testing for Cancer Susceptibility: Moderating Effect of Siblings' Test Results on Psychological Distress One to Two Weeks after BRCA1 Mutation Testing. 385-392.
• Geller, G., T. Doksum, B.A. Bernhardt and S.A. Metz. "Participation in Breast Cancer Susceptibility Testing Protocols: Influence of Recruitment Source, Altruism, and Family Involvement on Women's Decisions." 377-383.
• Durfy, S.J, D.J. Bowen, A. McTiernan et al. "Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington." 369-375.
• Codori, A.M., G.M. Petersen, D.L. Miglioretti et al. "Attitudes toward Cancer Gene Testing: Factors Predicting Test Uptake." 345-351.
• Petersen, G.M., E. Larkin, A.M. Codori et al. "Attitudes toward Colon Cancer Gene Testing: Survey of Relatives of Colon Cancer Patients." 337-344.
• Glanz, K., J. Grove, C. Lerman et al. "Correlates of Intentions to Obtain Genetic Counseling and Colorectal Cancer Gene Testing Among At-Risk Relatives from Three Ethnic Groups." 329-336.

"Impact of Genetic Counseling and Testing for Breast Cancer"
Funded by the American Cancer Society grant # PBR-97 (Member of CGSC)
Project period: 1995-1998
The overall goals of these studies are to demonstrate the psychological effects of genetic counseling for women with a family history of breast cancer and the additional psychological impact of genetic testing as it is introduced into clinical counseling approaches.

• Offit, K. Clinical Cancer Genetics: Risk Counseling & Management. New York: Wiley-Liss, Inc., 1998. 419p.

"NIH-DOE ELSI Working Group Task Force on Genetic Testing"
Project Start Date: April 1995

• Cho, M.K., M. Arruda, and N.A. Holtzman. "Educational material about genetic tests: Does it provide key information for patients and practitioners?" American Journal of Medical Genetics. 1997; 73: 314-320.
• Holtzman N.A., P.D. Murphy, M.S. Watson and P.A. Barr. "Predictive genetic testing: From basic research to clinical practice." Science. 1997; 278: 602-605.
• NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing. eds. N.S. Holtzman and M.S. Watson. September 1997.

"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance."
Meeting was held July 19, 1995 on the NIH Campus in Bethesda, Maryland

• Rothenberg, K.H. "Genetic Information and Health Insurance: State Legislative Approaches." Journal of Law, Medicine & Ethics. 1995; 23: 312-319.
• Hudson, K.L., K.H. Rothenberg, L.B. Andrews et al. "Genetic Discrimination and Health Insurance: An Urgent Need for Reform." Science. October 1995; 270: 391-393.

"Informed Consent in Research Involving Human Participants Request for Applications and Research Consortium"
September, 1996 (Trans-Agency Initiative)

• IRB: Ethics & Human Research Supplement. September-October 2003; 25(5).
  • Siminoff L.A. "Toward Improving the Informed Consent Process in Research with Humans." pp. s1-s3.
  • Sachs G.A., Hougham G.W., Sugarman J. et al. "Conducting Empirical Research on Informed Consent: Challenges and Questions." pp. s4-s10.
  • Agre P., Campbell F.A., Goldman B.D. et al. "Improving Informed Consent: The Medium Is Not the Message." pp. s11- s19.
  • Broome M.E., Kodish E., Geller G., Siminoff L.A. et al. "Children in Research: New Perspectives for Informed Consent." pp. s20-s25.
  • Hougham G.W., Sachs G.A., Danner D. et al. "Empirical Research on Informed Consent with the Cognitively Impaired." pp. s26-s32.

"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace: Implications for Employment, Insurance and Privacy"
Meeting was held October 4, 1996 in Bethesda, Maryland

• Rothenberg, K.H., B. Fuller, M. Rothstein et al. "Genetic Information and the Workplace: Legislative Approaches and Policy Challenges." Science. March 21, 1997; 275: 1755-1757.

"National Human Genome Research Institute and National Action Plan on Breast Cancer Workshop on Privacy and Confidentiality in Genetics Research"
Meeting was held September 16-17, 1997 in Bethesda, Maryland

• Fuller, B.P., M.J. Ellis Kahn, P.A. Barr et al. "Privacy in Genetics Research." Science. 27 August 1999; 285: 1359-1361.

"National Coalition for Health Professional Education in Genetics"

• Collins, F.S. "Preparing Health Professionals for the Genetic Revolution." JAMA. (Editorial) October 1997; 278(15): 1285-1286.

"Followup Workshop to the Consensus Development Conference on Genetic Testing for CF"
October 15-16, 1997.

• Mennuti, M.T., E. Thomson and N. Press. "Screening for Cystic Fibrosis Carrier State." Obstetrics & Gynecology. March 1999; 93(3): 456-461.
• Vernon, S.W., D.J. Bowen and A.F. Patenaude (eds.) "Psychosocial Aspects of Cancer Genetic Testing: Findings from the Cancer Genetics Studies Consortium." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4). [Pubmed]
• Grody W.W., Desnick R.J. [Editorial] "Cystic Fibrosis Population Carrier Screening: Here at Last Are We Ready?" Genetics in Medicine. March/April 2001; 3(2): 87-90.
• Grody W.W., Cutting G.R., Klinger K.W. et al. "Laboratory Standards and Guidelines for Population-based Cystic Fibrosis Carrier Screening." Genetics in Medicine. March/April 2001; 3(2): 149-154.
• Burke W., Emery J. "Science and society - Genetics education for primary-care providers." Nat Rev Genet. 3(7): 561-566 July 2002.
• Lerman, C., C. Hughes, J.L. Benkendorf et al. "Racial Differences in Testing Motivation and Psychological Distress following Pretest Education for BRCA1 Gene Testing." 361-367.
• Vernon, S.W., E.R. Gritz, S.K. Peterson et al. "Intention to Learn Results of Genetic Testing for Hereditary Colon Cancer." 353-360.

"Hereditary Hemochromatosis: Gene Discovery and Policy Meeting"

• Burke, W., E. Thomson, M.J. Khoury et al. "Hereditary Hemochromatosis: Gene Discovery and Its Implications for Population-Based Screening." JAMA. 1998; 280: 172-178.

"Bioethics Education Materials and Resources Subcommittee (BEMARS)"

• Love, C., E. Thomson and C. Royal. "Ethical Issues in Research Involving Human Participants." [nlm.nih.gov] Current Bibliographies in Medicine 99-3. Bethesda, Maryland: National Library of Medicine, May 1999: 4650 citations.

"Informed Consent in Human Subjects Research"

• Proceedings: Conference on Informed Consent in Human Subjects Research. Cookeville, Tennessee: Tennessee Technological University, Spring 2000.

"Genetic Medicine-Primary Care Faculty Development Program"

• Culver J.O., Hull J.L., Dunne D.F.B., et al. "Oncologists' opinions on genetic testing for breast and ovarian cancer." Genet Med. 3(2): 120-125 March-April 2001.
• Evans J.P., Skrzynia C., Burke W. "The complexities of predictive genetic testing." Brit Med J 322 (7293): 1052-1056 April 28, 2001.
• Pinsky L., Pagon R., Burke W. "Genetics through a primary care lens." Western J Med. 175(1): 47-50 July 2001.
• Bates B.R., Templeton A., Achter P.J., et al. "What does "a gene for heart disease" mean? A focus group study of public understandings of genetic risk factors." Am J Med Genet. A 119A(2): 156-161 June 1, 2003.
• Pinsky L.E., Culver J.B., Hull J., et al. "Why should primary care physicians know about breast cancer genetics?" Western J Med 175(3): 168-173 September 2001.

"Request for Proposals to Study Iron Overload and Hereditary Hemochromatosis"

• Mclaren C.E., Barton J.C., Adams P.C., et al. "Hemochromatosis and Iron Overload Screening (HEIRS) Study Design for an Evaluation of 100,000 Primary Care-Based Adults." The American Journal of The Medical Sciences. February 2003; 325(2): 53-62. [PubMed]
• Anderson R.T., Press N.A., Tucker D.C. et al. "Patient acceptability of genotypic testing for hemochromatosis in primary care."quot; Genetics IN Medicine. October 2005; 7(8): 557-563. [PubMed]

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Last Updated: March 15, 2013