Posted By Alice C. Linsley,
Wednesday, February 12, 2014
| Comments (1)
By Amy Julia Becker
It sounds pretty basic. A lovely young couple wants children, and they want those children to prosper and grow. They want to do as much as they reasonably can to ensure that those children have good, full lives. Happy lives. Lives that are as free from suffering and pain as possible. The problem is that they run the risk of bearing children with a gene that will probably cause a slow and painful death, albeit a death many decades in the future.
What should they do? Never have children? Adopt? Take the risk and conceive, come what may? Take the risk, conceive, and then terminate the pregnancy if the gene is present? Or try preimplantation genetic diagnosis, which involves creating embryos and testing them for the problematic gene and only implanting embryos free of the gene?
In the case of the Kolinsky family, as Gina Kolata reports for the New York Times, they chose preimplantation genetic diagnosis (PGD) in order to be certain that none of their children inherited their mother’s rare, painful, fatal neurological disease. As Kolata reports, the use of genetic testing and PGD is on the rise, and so the ethical questions associated with these tests are all the more relevant to all of us. As she writes:
Ethicists are divided about use of the method.
Janet Malek, a bioethicist at the Brody School of Medicine at East Carolina University, said that people who carry a gene like GSS have a moral duty to use preimplantation diagnosis — if they can afford it — to spare the next generation.
"If there is a paradigm example in which a parent can have an obligation to use this technology, this is it,” she said.
But David Wasserman, an ethicist at Yeshiva University and consultant to the department of bioethics at the National Institutes of Health, says there is no obligation to use it for diseases that do not start until adulthood. Eliminating embryos with such genes is essentially saying someone like Ms. Kalinsky should never have been born, he said.
I should say here and now that technologies such as PGD concern me for a host of ethical reasons, including the fact that we as a culture tend to let ethics follow technology rather than the other way around. PGD provides yet another example of a technology that people are using in the midst of an ongoing debate about the potential personal and social repercussions.
Amy Julia Becker