This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Austin Alexander, Siftgen, Inc.
As the era of personal genomics comes of age, genomic information will play an increasingly important role not only in medical decisions but also in reproductive decisions. Already, preimplantation genetic screening (“PGS”, also referred to as preimplantation genetic diagnosis or “PGD”) is being used to screen embryos prior to implantation to select those without known genetic diseases such as cystic fibrosis and Huntington’s disease. As the understanding of the genetic contribution to diseases and traits increases, and as the cost of full genome sequencing decreases, it will become feasible to use PGS to target the full spectrum of genetic diseases.
With time, it will also become possible to preferentially select for beneficial genetically-influenced traits such as athletic talents or high intelligence. Aside from the ethical and religious concerns with such a technology, one of the main social concerns is the potential for increased socioeconomic stratification. If access to PGS were limited to only those prospective parents with the financial means to pay for it, their progeny could gain a perpetual advantage over those whose parents could not afford it. Reactionary fear of this possibility has led to a backlash against PGS, with various groups calling for restrictions or outright bans on its use. This backlash is likely to increase with the number of traits that can be screened for, which could result in diminished access to those families who could most benefit from this technology. In order to ensure continued access to PGS while mitigating the risk of increased socioeconomic inequality, a new policy of universal access will be needed.
To-date, most of the debate surrounding PGS has been focused on whether and how to restrict access. Religious groups such as the Catholic Church have come out against it. In the UK, its use is governed and limited by the HFEA. In a few other countries such as Germany, Ireland and Switzerland, PGS is banned. This approach of limiting reproductive freedom denies parents the opportunity to avoid passing on deleterious mutations to their offspring and can result in unnecessary abortions with parents forced to choose after pregnancy has commenced rather than at the less destructive pre-implantation stage. These limitations also deny future generations the opportunity for improved health and quality of life and would result in many children born with diseases that could otherwise have been avoided. Furthermore, this policy could have the unintended effect of exacerbating one of the very problems it is intended to solve: by limiting access, it promotes increased reproductive tourism by affluent potential parents who can afford to travel to more favorable jurisdictions in order to gain access, thereby creating an even greater financial hurdle and increasing socioeconomic stratification.
A better approach would be focusing on how to make the option of PGS accessible to all those who wish to use it. With equal access, parental financial differences would become irrelevant and the playing field would be leveled across socioeconomic groups. While the choice of whether to use PGS should remain a personal one made by the parents, its widespread use could also result in public health benefits with the potential for numerous heritable diseases to be eliminated in much the same way as the widespread use of vaccines has eradicated many major infectious diseases in the developed world. Although some may argue that providing increased access is unaffordable, the costs of PGS could be more than offset by the lifetime healthcare cost savings of its beneficiaries. These benefits and the opportunity to minimize socioeconomic divergence all point to the need for policies that promote increased access for all groups, in direct opposition to those policies of restriction that have been pursued so far.