Key Questions About the Social and Ethical Implications of Nuclear Genome Transfer or “3-Person IVF” Techniques
Posted by Jessica Cussins on January 22nd, 2015
Nuclear genome transfer for preventing the transmission of mitochondrial disease – also known as “3-person IVF” – is a form of inheritable human genetic modification, which has long been considered off limits. More than 40 countries have adopted laws to prohibit it (and human reproductive cloning), citing deep and enduring concerns about safety, human dignity, and societal consequence.
Extreme biological procedures such as inheritable genetic modification and reproductive cloning pose enormous safety issues. They also raise profound social and ethical challenges. Here we show eight questions that should be considered in assessing nuclear genome transfer or “3-person IVF” techniques. For more detail, see our resource page here.
- What are the likely policy consequences of permitting nuclear genome transfer? If we allow inheritable genetic modification for preventing the transmission of mitochondrial diseases, won’t it increase pressure to allow it for other diseases? If a new line is to be drawn, where would it be? Or will people simply design their children as they wish as soon as technology allows? If so, how could a “genetics arms-race,” leading to new and increasing social disparities, be prevented?
- How will women affected by mitochondrial disease be informed of alternative options for having healthy children, which include IVF with genetic screening to choose a healthy embryo, prenatal genetic testing, using third-party eggs with IVF, and adoption?
- How will women considering using these techniques be fully informed of the risks they pose and the controversies they raise? Would physician-researchers unduly pressure women who are candidates for the procedures, consciously or unconsciously, because of their eagerness for a technical “breakthrough?” Would women in this position be especially vulnerable to persuasion because of their illness?
- Increasing evidence highlights the impact of mitochondria not only on energy production, but on other traits. How will any resulting children feel to know they have been the subjects of biological experimentation, and have inherited traits from three different people? Will they be told? Will they be permitted to know the woman who provided the second egg leading to their conception? (Proposed regulations in the UK claim a child will have no right to this information, and that the child will have no relation to this woman.)
- How will any resulting children be followed up to know if the techniques work or are safe? Mitochondrial disorders often manifest late in life; are long-term studies plausible? Since these altered genomes will be passed on to future generations, will the children’s children also be followed up? (Proposed regulations in the UK currently do not require any follow-up; they also don’t require parents to inform children of the means of their conception.)
- How will the non-parenting women who provide their eggs be recruited? How will they be compensated? How will they be followed up to monitor the long-term impact of egg retrieval on their health?
- Who will fund this work? Who will profit from it? Who will oversee it? Who will be at fault if anything goes wrong?
- How can we ensure that people who are already alive and suffering from mitochondrial diseases receive the treatment and care that they need right now?
Posted in Assisted Reproduction, Bioethics, Biopolitics, Parties & Pundits, Biotech & Pharma, Egg Retrieval, Human Rights, Inheritable Genetic Modification, Jessica Cussins's Blog Posts, Reproductive Justice, Health & Rights, US Federal
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