Blessed by Science: Response to a Genetic Disease

Jun 4, 2015 | Genetics

embryo illustrationAs much of the world struggles with the moral dilemmas that arise from the answers that genetic testing can and does provide, there are pockets of society that have found ways to embrace technology for the very basic reason of ensuring the longevity of their communities. Ironically, it is some of the very oldest of the communities that depend on the latest in science to help ensure the future of their ancient ways.
One such group is the Native Americans here in North America. For generations they have used blood quantum laws and/or the Dawes Rolls to help with decisions about enrollment. With the wealth brought to Native American Nations from gambling, enrollment soared, and many
looked for ways to ensure accurate monitoring of membership with DNA testing. The challenges were many, including the mistrust of the new technology by the elders, who relied on internal history and judgment.
Another group to recently embrace the technology of DNA testing has been the Jewish Community, in an effort to reduce the prevalence of Tay-Sachs disease, a genetic disorder that affects the nervous system. Alexandra Ossola has written about the disease in the Ashkenazi Jewish community, and the use of DNA technology and screening to greatly reduce the prevalence of Tay-Sachs in New York City Hasidic communities.
Yosef Eckstein and his wife had four children born with the disease, which is typically found in one of every 3,600 children born to Ashkenazi Jewish families. He learned that there were ongoing efforts in the larger Jewish community to reduce the prevalence of the disease by doing genetic tests for couples before they had a child, but it hadn’t yet caught on in the Hasidic community. Eckstein developed a genetic screening program, calling it Dor Yeshorim, the righteous generation.
Tay-Sachs is cause by recessive genes, so parents who carry the gene have no indication until they have a baby with the disease – or if they get a genetic test. The program Eckstein devised was a way to screen people for the recessive gene, while keeping the results anonymous. Young adults of high school age would have their blood tested, and receive an ID number. Later, when marriage was proposed, the families would call the Dor Yeshorim hotline, and provide the 2 ID numbers. If one of the two was a potential carrier, it was a good match; if both were carriers, the operator would forewarn the caller that it was a bad match.
The program is not without controversy, as Eckstein has been accused of practicing eugenics or “playing God.” Proponents have wondered if such a program would work in the larger US populations, with genetic screenings such as BRCA breast cancer genes.
What do you think? Should those set for marriage go their separate ways if they are carriers of a genetic disease with a 1 in 3,600 chance of appearing in a child? Or is the community smart to minimize the risk of inherited disease by discouraging marriages?
For more information and the full article, click here.


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