Bioethics, inheritable genetic modification, and politics: informing the policy-making craft

New genetic knowledge and technique continue to generate a torrent of possibilities and associated worries. We hope we might be diagnosed more effectively, treated with pharmaceuticals tailored to our genomes for improved efficacy and diminished side effects, or cured by new somatic cell gene transfer (SCGT) technologies. But we also fear that we might be shunned from the workplace if our employers learn of the vulnerabilities foretold by our genomes, denied health insurance on the basis of genetic test results though we are currently asymptomatic, or misled regarding the prospects of success and the risks of harm while serving as subjects of experimental gene-based research. The possibilities and worries surrounding inheritable genetic modification (IGM), in particular, are remarkable in their variety, nuance, and difficulty.

The focus of these possibilities and worries will vary according to the roles and responsibilities of those who may soon face choices about IGM. First, for parents, there is the hope that future children might enjoy lives free of genetic contributions to burdensome or deadly disease and disability, but also the fear that parents might choose badly – whether due to an overabundance of daring or caution, concern or neglect, perfectionism or ennui, piety or irreverence. If parents do engineer their children, will they be volunteering them as subjects in a grand research project, with risks that are unknowable and, potentially, equally grand?