Science, Elder Law and Genetic Counseling...

I think I might like winter better, if it always happened "conveniently" and with plenty of notice, as did Saturday's snow in Pennsylvania.  For once, I was prepared to be at home, with a stack of good reading materials for catching up when the joys of house-cleaning and snow shoveling faded. 

I am intrigued by the Fall 2015 issue of the NAELA Journal that focuses on how advances in genetic testing and medicine may be reflected in the roles of lawyers who specialize in elder and special needs counseling.  A leading article in the issue introduces the three primary uses of modern genetic testing -- for diagnosis of disease, for determination of carrier status, and for predictive testing -- while reminding us there are limits to each function.  In looking at age-related issues, the authors note:

 

Genetic testing is beginning to reveal information regarding susceptibilities to the dis­eases associated with old age: Alzheimer’s disease, Parkinson’s disease, diabetes, and cancer. Genetic test results showing a higher risk of such diseases can result in a cascade of conse­quences. Francis Collins, mentioned at the beginning of this article, responded to his test results thoughtfully by making lifestyle changes to reduce the probability that the increased genetic risk would be expressed in actual disease. It is important to note that, for some con­ditions, lifestyle factors’ influence on disease risk is understood; however, for many of the conditions that affect seniors, this influence is not yet known.

 

Other reactions to a high-risk test result may be more aggressive than diet and exer­cise changes. A well-publicized example is Angelina Jolie’s bilateral mastectomy. She was cancer-free but learned that she carries a BRCA1 mutation, which increases her lifetime risk for breast and ovarian cancer. She chose to undergo prophylactic mastectomy to reduce her breast cancer risk, whereas other women choose to increase breast cancer surveillance, such as undergoing more mammograms and breast MRIs. Both options are available to women who carry a BRCA1/2 mutation.

 

Will those found to be at elevated risk for more complex conditions such as Alzheimer’s disease or Parkinson’s disease make premature life choices, such as early retirement or mar­riage, based on perceived risk? Earlier in this article it is explained that an individual’s geno­type rarely determines his or her medical destiny. For example, many people with a higher genetic risk for Alzheimer’s disease will not actually develop it, while many with no apparent higher genetic risk will. Is the risk that members of the general public will misunderstand and overreact to the results of a genetic test sufficient reason to prevent them from obtaining the information gleaned from such a test? Should we be ensuring that those undergoing genetic testing are aware of its benefits and limitations through individualized genetic counseling? This, of course, presents its own challenges of access and availability.

In reading this, it seems likely that lawyers may encounter complicated issues of confidentiality, especially when counseling "partnered" clients, while also increasing the significance of long-range financial planning and assets management.  

For more, read Genetic Testing and Counseling Primer for Elder Law and Special Needs Planning Attorneys, by CELA Gregory Wilcox  and Rachel Koff, Licensed Certified Genetic Counselor.