Françoise Baylis continues to advocate for broad societal consensus on the future of germline genome editing and sees the Parliamentary Assembly of the Council of Europe as an ally given their support of broad public engagement.
A 20th anniversary celebration of the Oviedo Convention is being held in Strasbourg, France, October 24-25. The goal of this international conference is to revisit the treaty for the protection of human rights and the dignity of the human being, and develop an action plan for the Committee on Bioethics. In anticipation of this conference, many have been clamouring for changes to Article 13 of the Convention, which prohibits deliberately changing the genes that are passed on to children and future generations (human germline modification). Article 13 currently permits changes to human somatic cells (such as skin cells and muscle cells), but not to human germ cells (egg or sperm) or embryos.
Some people think that it is time to lift the ban on human germline modification. They believe that it should be possible to make genetic changes to human eggs, sperm and embryos.
In rather dramatic terms, some have even suggested that maintaining the ban on germline modification is unethical. For example, bioethicists Peter Sýkora and Arthur Caplan insist that “it is unethical to hold hostage patients with severe genetic diseases to fears of a distant dystopian future.” They have in mind a very small subset of patients who are at risk of having children with a hereditary disease, who want healthy genetically-related children, and for whom existing technologies are not an option. They advocate making genetic changes not only to the patients with severe genetic disease, but also to their future children by changing the patients’ reproductive cells.
From my perspective, one cannot summarily discount the potential (some would say likely) negative downstream social consequences of editing human reproductive cells and embryos. Concerns about these consequences are at the heart of Chapter IV of the Oviedo Convention. This chapter is on the human genome and it focuses on discrimination and eugenics.
The risks of increased discrimination (for example, racism, ableism, sexism) and stigmatization that accompany efforts to select for and against specific traits (particular characteristics and required qualities) are considerable. In part, this is because there is no agreed upon understanding of what counts as a severe genetic disease. For example, some believe hereditary deafness is a severe genetic disease. Members of the signing Deaf community disagree. Deaf persons worry that gene editing will be used to eradicate their social, linguistic community. They argue that research aimed at eliminating hereditary deafness is a form of cultural genocide. Specifically, they worry that if they become fewer in number through overt efforts to ensure that they are not born, then they will experience increased discrimination. Manifestations of this discrimination might include renewed efforts to extinguish signed language and increased efforts at assimilation.
Diversity is an important social equalizer insofar as it makes it less possible to “Other” those who are different. If you homogenize a population by “correcting” difference, you increasingly marginalize those who are outliers and can be readily identified as such. This marginalization is informed by the same values used to justify the initial selection of traits worth correcting.
In advance of the 20th anniversary Oviedo conference, the Parliamentary Assembly of the Council of Europe has proposed a five-step plan. The first step is to encourage member States that have signed, but not yet ratified, the Oviedo Convention to do so. In the alternative, if it is not possible to ratify the Convention (which entails incorporating the principles of the Convention into national legislation) these same member States are to be encouraged to introduce a national ban on establishing a pregnancy using germline cells or human embryos that have been genetically modified. The second step is to foster “a broad and informed public debate.”
The first step recommended by the Parliamentary Assembly is an effort to maintain the status quo (to prevent the clinical use of “germline editing”) so that the second step, which highlights the need for robust debate and discussion of ethical concerns, can meaningfully take place. Taken together these two steps demonstrate a clear valuing of public engagement on a topic that is of interest to us all – namely, the potential (over time) to change the human species through heritable germline modifications. After all, it would be disingenuous to foster “a broad and informed public debate” (step two) without at the same time stopping scientists from doing the science that is the subject of public debate (step one).
The importance of fostering a broad and informed public debate on germline genome editing cannot be overstated. My sincere hope is that over time this debate might bring us to an unprecedented broad societal consensus about the appropriate use of germline genome editing technology. The means to this nebulous end include slow science, ethics literacy, and a commitment to the principles of responsibility, self-discipline, respect and cooperation.