I am an anthropologist and bioethicist who investigates the lived experiences of controversial medical treatments.
With their primary goal to advance scientific knowledge, most scientists are not trained or incentivized to think through the societal implications of the technologies they are developing. Even in genomic medicine, which is geared toward benefiting future patients, time and funding pressures make real-time ethics oversight difficult.
Related: 'Who are we to say they shouldn't exist?': Dr. Neal Baer on the threat of CRISPR-driven eugenics By submitting your information you agree to the Terms & Conditions and Privacy Policy and are aged 16 or over.But the societal implications of this technology are still vast. And researchers can already start exploring the ethics by engaging communities well ahead of time.
Losing a baby to severe genetic disease leads to profound suffering for families. But the same genes that cause disease may also create human identity and community. As the National Council on Disability outlined in its report, people with disabilities can have a good quality of life when given enough social support.
Seeing the fetus as a separate patient oversimplifies the maternal-fetal relationship. Doing so has historically downgraded the interests of the pregnant person. Ultimately, researchers can't know whether there would be unintentional, collateral germline edits until decades into the future. It would require editing a significant number of fetuses' genomes, waiting for these fetuses to be born, and then waiting to analyze the genomes of their future descendants.
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