Last year, the Program for Jewish Genetic Health at Yeshiva University/Albert Einstein College of Medicine relaunched an online resource designed to educate people about a wide range of complex genetic issues.
MyJewishGeneticHealth.com covers such topics as hereditary breast and ovarian cancer, pre-conception carrier screening and diseases that are prevalent in the Jewish population. The Jewish Week spoke with Chani Wiesman, a genetic counselor in the Einstein program, about Jewish genetic diseases and other more general issues about genetics.
Jewish Week: What are the biggest myths out there about genetic testing?
Chani Wiesman: First, some people think that when you do a “genetic test” you can find out about everything in all your genes at once. In reality, most genetic tests are very specific and are done for a particular issue.
Second, a lot of my patients think that “normal” results are a guarantee that everything will be fine, when in fact genetic testing is not 100 percent and can never rule out every potential problem.
Finally, people worry that once you do genetic testing, you then will have to resort to the most severe option, such as radical treatments or termination of pregnancy. What you do after you’ve undergone genetic testing is always your choice. Genetic testing (and the process of genetic counseling) provides you with more information to help you make that decision.
Do you feel as if the Jewish community is sufficiently knowledgeable about all the new genetic diseases that have been discovered, beyond Tay Sachs?
No. There is widespread “genetic illiteracy” when it comes to understanding genetics, genetic testing and the implications of genetics for healthcare in most communities, and the Jewish community is no different. As the scientific community learns more, the list of diseases with a Jewish genetic component continues to expand (to name a few: Crohn’s disease and Ulcerative Colitis, Parkinson’s disease, deafness, hereditary breast and ovarian cancer). We in the field of genetics learn something new every day in this realm and need to keep on our toes to be educated about all of the new developments. We developed MyJewishGeneticHealth.com to provide accessible free education about these timely topics to the community.
Have you seen more women sign up for genetic testing for BRCA 1/2 now that the Affordable Care Act covers all pre-existing conditions?
I haven’t. Back in 2008, a federal law called the Genetics Information Non-Discrimination Act (GINA) was passed. This law put in place protections so that a health insurance company or employer was not able to use the results of a genetic test in order to make decisions about insurance coverage, premiums, hiring, firing, pay, or promotions. Since GINA was already in effect, the passage of the Affordable Care Act didn’t really change how insurance companies deal with genetic test results.
Importantly, the protections afforded by GINA do not extend to life insurance or long-term care insurance companies, and they can thus use the results of a genetic test to decide if they will cover you and determine your rates.
We did, however, see more women sign up for BRCA genetic testing following Angelina Jolie’s very public disclosure regarding her decision to pursue BRCA testing and subsequent management decisions. Her openness raised public awareness about hereditary breast and ovarian cancer and the importance of BRCA testing.
Have you noticed any resistance to genetic testing from any particular part of the Jewish community?
There is some resistance to knowing your genetic carrier “status” in some segments of the Jewish community, and that’s why people opt for models such as Dor Yeshorim, where they are still pursuing genetic testing and using that information in a positive way, just not learning their actual mutation “status.” This model was developed in part to get around the issue of stigmatizing families and harming marriage potential of offspring. We try to discourage against this sort of thinking, since genetic and medical issues exist in all families. Luckily, most of the time, when there are tangible medical interventions and benefits that could be obtained from pursuing genetic testing, families opt to pursue testing, regardless of where they fall in the spectrum of Jewish life.
Do you worry that technology is running way out ahead of ethics when it comes to issues like genetic screening and the like?
Sometimes. Genetic technology is moving very fast, and the science and ethics are struggling to keep up. Just because we can do something doesn’t mean we should, and more is not always better. Not only are there large bioethical questions that come up related to genetic technology and genetic testing, but Jewish medical ethics has a crucial role to play as well. The Jewish community leaders in this realm have a lot of work ahead of them.