Direct to consumer genetic testing and gamete donor conception: ethical challenges

This paper examines recent developments in direct-to-consumer genetic (DNA) testing (DTCGT) and the ethical challenges it raises for those affected by donor conception (using donated gametes, eggs and sperm, to conceive children). First, DTCGT can result in the complete removal of donor anonymity at any stage in the donor conceived person’s life, and this has widespread implications for all those involved in donor conception. Second, for regulators: DTCGT can disrupt regulatory prohibitions on information disclosure. Third, for donor conceived people: there is potential harm in discovering you are donor conceived via DTCGT, and DTCGT creates new 'gatekeepers' of knowledge about donor conception, who have to decide whether to disclose this information. DTCGT also raises normative questions for those involved in donor conception. For donors: do donors have any obligation to participate in DTCGT, or to provide their genetic data to donor conceived offspring? For parents through donor conception: how does DTCGT affect decisions about disclosing donor conceived origins to their child, and should parents test their child, and if they decide to do so, when? The paper concludes by making recommendations for how the ethical challenges posed by DTCGT might be overcome or at least ameliorated.