Retirement and Risk: Betting on Your Genes?

Jane Sarasohn-Kahn of Health Populi points to an interesting report from the Society of Actuaries. In a survey of Americans age 45 to 80 both pre-retirees and current retirees are most concerned about the cost of health care in retirement. Pre-retirees worry about paying for "adequate care" and current retirees worry about paying for "long-term care". (These do not seem like mutually exclusive categories to me, but maybe I need to re-read the document: Understanding and Managing the Risks of Retirement: 2007 Risks and Process of Retirement Survey Report.) From a predictive health perspective, I wonder how personalized genetic information might change the risk perceptions and behaviors of those making retirement plans. Would, for example, a pre-retiring employee opt to work longer after acquiring a genetic test indicating an increased risk for a specific kind of cancer? If such a pre-retiree also learned that the peek incidence for almost all cancers is in late middle age and tapers off after about 70 years of age, they might work an extra decade just to be more certain that cancer wasn't "in the cards". On the other hand, would current retirees with genetic information that suggested a long (if not painless) lifespan purchase more aggressive insurance for long-term care? - J.O.

Weighing Hope: Living at Risk for Huntington Disease

If you had a parent with Huntington Disease, you would have a 50:50 chance of also having the disease. That's a very high risk - flip a coin - for a disease that has no cure. To make matters worse, the risk itself could strain relationships, lead to social stigmatization and even discrimination. So, if you were at risk for the disease, but had thus far declined a diagnostic, genetic test, would you tell your co-workers, friends and family members about your risks?

Before assuming that you would share news of this risk with all the important people in your life, you might want to read a recent publication by lead author Kimberly A. Quaid, a PredictER team member. In "Living at risk: concealing risk and preserving hope in Huntington Disease" (Quaid KA, Sims SL, Swenson MM, et al. J Genet Couns. 2008 Feb;17(1):117-28. Epub 2007 Oct 18. PMID: 17943424), Quaid et al report the results of open-ended, qualitative interviews of 55 individuals at risk for the disease. Although research on the psycho-social impact of living with the knowledge of genetic risk for Huntington Disease often focuses on the decision of whether or not to be tested and/or whether or not to share the test result, this paper is unique in that it examines: 1) the decisions of those who have not received a genetic test and 2) the ongoing, daily decisions to both disclose and conceal this risk information. After reviewing the unstructured interviews, the authors conclude that some people chose to conceal their risks for many valid reasons, including: to protect themselves from discrimination, to identify the best circumstances in which to share the information with loved ones (especially young children) and to preserve personal hope that they will not succumb to the disease. Quaid et al also remind us that: "Choosing to be tested is, in a way, a decision to disclose one's real risk to oneself. Participants' choosing not to be tested is not denial but a positive way to preserve both hope and their identities as people with a future". The authors encourage clinicians to respect a patient's desire not to be tested. For some patients a genetic test for an incurable disease will not provide helpful information; in fact, for some, the "knowledge … of HD may serve to destroy hope".

To Blog or To Jog? Genetic Tests and "Life-Changing" Decisions

In his November 26th post "AfricanDNA.com - A New Genetic Genealogy Company", Blaine Bettinger of The Genetic Genealogist reviews a new genetic test and genealogy information provider. The venture (launched by Henry Louis Gates, Jr.--an esteemed literary critic and the director of Harvard's W.E.B. Du Bois Institute for African and African American Research, but not a geneticist) was also the subject of an article by Ron Nixon in The New York Times ("DNA Tests Find Branches but Few Roots", 25 November 2007). In this article Dixon quotes NYU sociologist and former advisor to the Human Genome Project, Troy Duster:

“People are making life-changing decisions based on these tests and may not be aware of the limitations .... While I don’t think any of the companies are deliberately misleading customers, they may have a financial incentive to tell people what they want to hear.”

Bettinger takes issue with the comment and asks: "Do people really make 'life-changing' decisions based upon the results of a genetic genealogy test?" He adds "So, what type of decisions are being referred to, and how often are people really making them?" A quick look at Duster's co-authored editorial in Science (19 October 2007) suggests that these decisions include potentially unexpected and sometimes distressing changes in personal identity, changes in self-reported ethnicity, and the selective financial support of African communities. While Duster's comment was made in the context of a discussion of genetic genealogy testing, he may have also had other genetic testing applications in mind or, perhaps, the unwarranted reification of race in genetic research. [See Duster's "Race and reification in science". Science 2005 Feb 18;307(5712):1050-1.]

Although some individuals (for better or for worse) may make "life-changing" decisions following the receipt of genetic genealogy test results, many more are expected to make these decisions following medical genetic tests. Bettinger's question, however, deserves attention here as well: Do people really make "life-changing" decisions based upon the results of a broad genetic test for uncertain health risks? Many individuals requesting a test for specific genetic disorders (Huntington Disease, for example) do make some life-changing decisions based upon the results, but how will individuals interpret increases in risks for more common health conditions? Heart disease, diabetes, osteoporosis? Many of us already know that we have a family history of one or more these (and other) diseases, but how many of us successfully respond to this information. Will the results of a genetic test provide better motivation to change our lifestyles? How many of us expect to jog more than we blog? -- J.O.

Citations:

Bolnick DA, Fullwiley D, Duster T, and et al. The science and business of genetic ancestry testing. Science. 2007 Oct 19;318(5849):399-400.
PubMed ID: 17947567 | PredictER CiteULike [excerpt]

Duster T. Race and reification in science. Science. 2005 Feb 18;307(5712):1050-1.
PubMed ID: 15718453 | PredictER CiteULike [excerpt]