Stanford School of Medicine
Stanford Center for
Biomedical Ethics–

Genetic Testing and Alzheimer Disease

Stanford University Program in Genomics, Ethics, and Society

What's New...

The PGES Alzheimer Disease Working Group's recommendations on genetic testing and Alzheimer disease appears in the July 1998 issue of Nature Medicine:

McConnell LM, Koenig BA, Greely HT, Raffin TA, and the Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing and Alzheimer Disease: Has the Time Come? Nature Medicine . 1998; 4 (7): 757-759.

The series of papers that make up the PGES Alzheimer genetics report will be published in the Fall 1998 issue of the journal Genetic Testing:

McConnell LM, Koenig BA, Greely HT, Raffin TA (eds). Genetic Testing and Alzheimer Disease: Has the Time Come? Genetic Testing . Fall 1998; forthcoming.

The Alzheimer Working Group

Recent advances in the genetics of Alzheimer disease (AD) raise clinical and ethical considerations regarding the introduction of genetic testing:

The genetics of AD is complex, with several identified high penetrance dominant genes, a common predisposing gene, and a possible mitochondrial gene implicated in the disease. Diagnosis is difficult and genetic tests may be used for diagnostic as well as predictive purposes. AD is a late onset disease, but one where patients are usually incapable of making their own decisions. An increasing number of promising preventative or delaying treatments, which do not exist for many other late onset diseases, affect the value of genetic testing. A significant theoretical issue we will tackle is probabilistic risk assessment -- how do patients and health care providers understand genetic risk information, how is this information best communicated, and what are the implications of decision analysis techniques for healthcare decisions?

This year-long Working Group effort will culminate in a book-length report, including a set of recommendations -- principles, policies and calls for legislative action -- grounded in the unique social, historical, cultural and political contexts of AD.

Major Conferences

Conference Brochure Image

The findings of the Alzheimer Working Group were unveiled at a major conference at Stanford University on October 25, 1997.

Draft Executive Summary and Recommendations of the Working Group -- comments are welcome!

Conference information, including "What's Next?" and links to detailed information about the speakers.

On November 8, 1997, in collaboration with Case Western Reserve University, PGES presented an invited session, Genetic Testing and Alzheimer Disease: Clinical and Ethical Considerations , at the joint meeting of the American Association of Bioethics, the Society for Bioethics Consultation, and the Society for Health and Human Values. This meeting, Visions for Ethics & Humanities in a Changing Healthcare Environment , was held November 5-9, 1997 in Baltimore, MD. Our session included a multi-disciplinary panel of expert commentators: Kenneth Kosik, M.D., Professor of Neurology, Harvard Medical School; Eric Juengst, Ph.D., Associate Professor of Biomedical Ethics, Case Western Reserve University; Robert Mullan Cook-Deegan, M.D., National Academy of Sciences; Elizabeth Thompson, R.N., M.S., Program Director, Clinical Genetics Research, National Human Genome Research Institute.

PGES presented its work on genetic testing and Alzheimer disease on Saturday, December 6 at Genetic Information: Acquisition, Access and Control . This international conference was organized by the Centre for Professional Ethics at the University of Central Lancashire, and the Euroscreen network on ethics of genetic screening in association with the International Association of Bioethics. PGES also presented its work on Sunday March 1 at the 5th Annual Meeting of the American College of Medical Genetics.

Alzheimer Disease Resources

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