|The First Meeting of the London County Council in the County Hall Spring Gardens, 1889 - Henry Jamyn Brooks|
Human germline genetic modification, which involves making genetic changes that will be passed on to future generations, is once again in the news.
Mid-March 2015, in anticipation of a publication about the use of CRISPR/Cas9 to edit the genome of human embryos, the journal Nature published two articles. There was a brief commentary “Don’t edit the human germ line” calling for a voluntary moratorium on germline modification, and a news item “Scientists sound alarm over DNA editing of human embryos” explaining that while some scientists want to ban germline alterations, others want the work to proceed. The anticipated study confirming the use of gene-editing techniques to modify the human germline was published online in April 2015. Various media outlets reported on this research and the Science Media Centre published the views of various “experts” on this development – some saying it should be allowed, others saying it should not be allowed.
Various commentators, including the authors of “Don’t edit the human germ line” have called for an open public discussion. I find this commendable! Unfortunately, despite all the articles and comments published recently, it is not clear: (i) where the public discussion should take place; (ii) what exactly the public discussion should focus on; and (iii) who should participate in the public discussion.
As to the “where”: It depends on the envisioned purpose of the discussion. If the purpose is to have a cohesive global approach to germline modification, one could argue that this should be a global discussion, perhaps hosted by the UNESCO International Bioethics Committee. Alternatively, this discussion could perhaps be part of current efforts to revise the CIOMS Ethical Guidelines for Biomedical Research. However, such a process takes time and recent articles and comments suggest that reaching a global consensus on the issue may be challenging.
Alternatively, if the purpose of the public discussion is to arrive at clear national policies on germline modification, then public discussion would only be needed in countries that do not already have a clear policy permitting or prohibiting germline modification. This means that no discussion would be needed in the United Kingdom, where parliament has just endorsed germline modification in approving mitochondrial replacement. Nor would it be necessary in the United States, where the National Institutes of Health have reaffirmed that such research will not be funded.
Finally, the recent articles and comments have given voice to people who argue in favour of germline modification, indicating that another purpose of the discussion might be to increase the acceptance of the application. If so, the “where” would shift to countries that are seen as prohibiting germline modification.
As to the “what”: If the public had to rely on the media reports of the last few weeks to know what the issues are, they might be confused. Although nearly every article includes such terms as “ethical” and “ethics,” the ethical issues are not clearly described. The main reason for opposing research on germline modification appears to be concerns about medical safety. However, there are also concerns about potential social harms. One such concern is that germline modification may lead to genetic enhancement.
This invites the following questions: Should the public discussion focus just on medical/health safety issues or also on social/societal safety? Importantly, should the public assess whether non-therapeutic genetic enhancements are desirable? If yes, should that discussion be limited to germline genetic enhancement or also entail somatic genetic enhancement?
Furthermore, given that it will not be possible to ascertain medical/health safety and social/societal safety of germline modification for future generation for some time (if at all) what does this mean for the safety debate? Should germline modification be halted because safety cannot be ensured for future generations? Or should the public decide whether potential benefits outweigh potential medical/health and social/societal risk for future generations?
Some people are using the controversy surrounding germline modification to sell other technologies such as preimplantation genetic diagnosis as safe alternatives to achieve the same goal as germline therapeutic modification. However, we should not assume that these alternatives are acceptable.
Finally as to the “who”: In the context of a public discussion, it is not clear who “the public” would be. The answer will vary depending on how we answer the “where” and “what” questions. A productive discussion about germline modification will have to address who is to be engaged in such a discussion. Furthermore, a vast literature exists that covers challenges linked to involving the public in a meaningful way. The articles and comments on germline modification do not engage with these challenges and do not give guidance as to how these challenges would be met.
Before a public discussion about human germline modification can take place, we had better first clarify what that discussion should look like.
For information about the problems with genetic modification and enhancement see: here
Image via Wikimedia Commons
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