Genetic Testing Ethics

At one time genetic testing was strictly used in medical settings, as a way to predict if someone was at risk of developing certain medical conditions. The results are not foolproof but can be a strong indicator of whether a person could develop diseases such as Alzheimer’s and perhaps pass it onto offspring. The question has always been what to do with this sobering information. One such famous case involved actress Angelina Jolie who got tested for the breast cancer gene and underwent a double mastectomy after discovering she carried the gene(s). She turned the powerful information she learned into action. The genetic testing arena has come a long way from the doctor’s office and this brave new world is now in the hands of consumers, making it as easy as ordering a genetic test online from providers such as 23andMe and AncestryDNA. The companies have collected millions of saliva specimens since the early 2000’s informing people about their cultural past as well as their health risks.

It’s likely that you and your friends have used the testing kits to satisfy both curiosity and fears and to unlock the secrets of your genetic code. But it is a slippery slope because this very personal information could be used against you to influence a financial decision, not just a medical one. It is commonly thought that The Genetic Information Nondiscrimination Act of 2008 (GINA) applies to life insurance, disability insurance, and long term care coverages. It doesn’t. Rather GINA, as well as The Affordable Care Act, only keeps health insurance companies and employers from discriminating on the basis of information found in a genetic test. There is no reference to life insurance companies.

And therein lies the rub since when you apply for life insurance the insurance company wants to see as much information as possible about your medical past, and family health history in order to quantify your mortality risk. So, in addition to a blood/urine exam and a review of your physician records, the companies will be interested in genetic screening results.The question will be how they get access to it (if it’s done by you privately) and what they are allowed to do with it to determine “adverse selection.” Consider a woman (like the Jolie case) who decides to have a double mastectomy after genetic testing reveals she has the BRCA1 gene and is at risk for breast cancer. Based on this information, an insurance company may charge an extra premium or deny her altogether, but the company didn’t consider her risk mitigation surgery. So here’s the dilemma – should public policy encourage us to pursue genetic screening to reveal or resolve serious medical conditions without using those revelations to penalize us?

It’s a conundrum that insurers are facing. Ironically, life insurance companies do reward consumers who engage in early detection and prevention when it comes to a chronic disease such as diabetes. If the diabetic is under a physician’s care and monitoring insulin levels, that consumer may be eligible for a “standard” premium rate. But if a condition is discovered by predictive screening the fear is that underwriters would use the information to discriminate against a new life insurance applicant, raising an ethical question about genetic discrimination. There are rules protecting U-S consumers from mandatory disclosure of predictive test results but they are not air tight. Some European countries such as France, Norway and Belgium have enacted laws to limit insurers’ access to genetic testing results for life insurance underwriting. But it is clear that this is a new frontier and we are just scratching the surface about how to balance our privacy issues with relevant information that could be used to assess our longevity.

 

 

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