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Bioethics Resources on the Web

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Biotechnology / Pharmacogenetics/Personalized Medicine

bullet Realizing the Promise of Pharmacogenetics: Opportunities and Challenges (2007)  - This report (posted  as a draft from comment until June 2007), prepared for the DHHS Secretary’s Advisory Committee on Genetics, Health and Society (SACGGS),  examines potential opportunities for pharmacogenetics (PGx) to advance the development of diagnostic, therapeutic, and preventive strategies to improve health, as well as challenges posed by PGx research and potential barriers to benefiting from PGx in clinical practice and public health.

bullet Policy Issues Associated with Undertaking a New Large U.S. Population Cohort Study of Genes, Environment, and Disease (2007) A SACGHS report to advise the government on undertaking a large scale study as has been done in several other countries. The report review scientific advances, policy issues, ethical issues and recommends public input and engagement.

bullet Genomic Medicine: A Revolution in Medical Practice in the 21st Century(2004) – A presentation by Director, NHGRI to the World Health Care Congress. Addresses life years saved in relation to scientific advances and treatment costs. The Policy and Ethics page of the NHGRI includes additional links.

Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003)  - A report of the President’s Council on Bioethics that examines the potential implications of using biotechnology “beyond therapy” for human enhancement. The report examines ethical implications of such uses.  A bibliography is included.

bullet Pub Med – This site links to more than 25 articles on ethical aspects of personalized medicine.

bullet NIH Pharmacogenetics Research Network - The network of multi-disciplinary research groups conducts studies addressing research questions in pharmacogenetics and pharmacogenomics (the genetic basis for variation in drug responses) and to populate a knowledge base (PharmGKB).  The latter will be used as a research tool to enable future pharmacogenetics studies. In 2005, the PGRN was renewed for a second 5-year period.  The long term goal is to translate this knowledge and identify safe and effective drug therapies designed for individual patients. The first report, of the group, Pharmacogenetics: Challenges and Opportunities, was published in 2006. The site links to on-line resources and publications.

bullet Personalized Medicine Coalition ((PMC) - The PMC educates about personalized medicine, helping private and public sector citizens understand the science, the issues and what is needed for the positive evolution of personalized medicine. This site links to news about personalized medicine, reports, other resources.

bullet International Federation of Pharmaceutical Manufacturers Associations (IFPMA) – This organization represents the worldwide research-based pharmaceutical industry and manufacturers of prescription medicines. The Federation has a central role in the exchange of information within the international industry, and in the development of position statements on matters of policy.

Ethical Promotion of Medicines (2007), a code for marketing, is posted on this site.

bullet Genetics and Personalized Medicine (2004) – This site provides results of a survey conducted for Research America on attitudes of Americans toward genetic testing for personalized medical care and attitudes toward other health care issues.
bullet BioTIK Projects on Biotechnology and Ethics – From  2001-2005 the Danish Parliament launched the BioTIK-project to focus on the promise of genetic technology offers (particularly in the plant and food area)  and to develop ethical principles to guide its development and regulation.  A report, Ethical Principles in European Regulation of Biotechnology - Possibilities and Pitfalls, was published in 2002.

bullet The Biotechnology for Europe Study: Opportunities and Challenges of Modern Biotechnology for Europe (2007) - The European Commission undertook an assessment of the progress made by biotechnology in several areas, including medicine and health. The purpose is to inform policy in the European community.
From Test Tube To Patient: Improving Health through Human Drugs - An informative primer from the Food and Drug Administration (FDA) that explains the role of clinical trials in the drug development process. The site provides access to a large number of FDA documents.

bullet  Access Excellence - An educational site originally launched sponsored by The Health Museum. The site includes resources on the ethics of biotechnology with links to articles on specific issues.

bullet Pharmacoethics.com – This site, compiled by Canadian Chris MacDonald, St. Mary’s University, Nova Scotia, CA is dedicated to the exploration of ethical issues related to the development, promotion, sales, prescription, and use of pharmaceuticals.

bullet When is the Racial Pharmacy Bad Medicine?- This link to the Hastings Center Bioethics Forum addresses targeting drugs for use in specific racial groups. It raises the ethical issue of whether this is good medicine or a use of race as a flawed surrogate for biology.

bullet Framework for Thinking Ethically About Human Biotechnology -  Santa Clara University’s Markkula Center for Applied Ethics Framework is applied to issues in biotechnology

bullet Personalized Medicine - A peer-reviewed journal that addresses scientific, commercial and policy issues in Personalized Medicine and includes news, conference reports and full review articles. Topics addressed include: Advances in molecular diagnostics, biological therapies or vaccine approaches at specific genetic and immunologic targets, cost-benefit issues for personalized medicine, ethics in personalized medicine, impact of personalized medicine on healthcare and the pharmaceutical industry and integration of diagnosis with therapy.

bullet Let’s Get Personal: Policy, Science and Ethics  in Personalized Medicine – A blog my Reagan Kelly, a doctoral student at University of Michigan, that links to published papers.

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Last updated: 5/18/11 4:29 PM