XYG Affair

This seemed to be the week where genetic testing came to the forefront. On Monday, my friend, who had grown up catholic in a small mountain-top village in Italy, called to tell me that he had just received the results of a DNA test which confirmed that in the 1600s (or earlier) one of his grandparents was an Ashkenazi (German) Jew. Adding to the intrigue, his family had emigrated to this village from Spain in the late 1400s when the Jews were forced to leave the country during the Inquisition. Until the genetic test, there had been no trace that any of his descendants were Jewish.

That same evening I went to a lecture at the library on genetic testing. The lecture was sponsored by the Newton Senior Center which offers a genetic counseling service. About 5 percent to 10 percent of cancers are strongly hereditary. So too are a host of other health issues ranging from heart disease to birth defects, hearing and vision loss, autism, muscular dystrophy, and more.

On Tuesday morning, STAT, a health and medical e-newsletter published by the Boston Globe, featured a story on genetic testing of embryos. The Pandora’s Box in all of this: the reliability of the results, and the ethical issues that are raised regarding the circumstances under which the test should be used, how the test is implemented, and what uses are made of its results.

Ever since the human genome was sequenced almost 15 years ago, a number of companies, such as Ancestory.com and 23&Me, have offered genetic testing services. By analyzing someone’s DNA, often through a blood sample or cheek swab, testing has offered the promise of uncovering their ancestral make-up or foretelling any hereditary-based health issues. But sometimes the results are wrong or may only be correct for a certain percentage of the time, which creates its own kind of uncertainty.

​Adding to the complexity are the ethical questions that it raises:

• Should people be allowed to choose or refuse the test? 
• Should it be mandatory, as newborn screenings are in some countries and states?
• Should people be able to control access to the results of their tests?
• If test results are released to third parties such as employers or insurers, what protections should be in place to ensure that people are not treated unfairly because of their genotype?
• Should parents abort a pregnancy if they discover their child is likely to be born with a disability or have it emerge later in life such as Huntington’s disease? 

 
The lingering question on genetic testing: is it worth it?
 
Learn More:
https://www.mypcnow.org/blank-d520x
https://www.statnews.com/2017/10/23/ivf-embryo-genetic-testing/?utm_source=STAT+Newsletters&utm_campaign=e7efd6dd4e-On_Call&utm_medium=email&utm_term=0_8cab1d7961-e7efd6dd4e-149636137
http://www.asaging.org/blog/personal-genomic-tests-healthy-aging-neither-feast-nor-foul
https://www.medscape.com/viewarticle/505222_4
https://www.nap.edu/read/2057/chapter/10
https://www.theguardian.com/science/2017/jul/23/what-i-learned-from-home-dna-test-kits-are-they-accurate-or-worthwhile
https://www.bostonglobe.com/ideas/2017/08/26/genetics-for-everyone/9yLzbnyXoRvIAkul74DwDM/story.html
https://seniorplanet.org/finding-your-roots-with-dna-testing/