Genome Editing and Human Reproduction: Behind the Headlines of the Nuffield Council on Bioethics Report
Article Aug 02, 2018 | by Hugh Whittall, Director of the Nuffield Council on Bioethics
Two weeks ago, the Nuffield Council on Bioethics released a seminal report on the social and ethical issues of heritable genome editing. In an article written exclusively for Technology Networks, Hugh Whittall, Director of the Council, gives an insight into how the report's conclusions were reached, and addresses the strong reactions to the report's main conclusion, that heritable genome editing interventions could be morally acceptable.
The Nuffield Council on Bioethics’ latest report concludes that ‘heritable genome editing interventions could be morally acceptable’. What exactly do we mean by this?
Not exactly the ‘green light for designer babies’ so beloved of headline writers and editors who have captioned this as such, packaged it up with strongly expressed opinions and commentary, and catapulted it into the world’s media. Not exactly a call to change the law to allow the use of these techniques in assisted reproduction in the here and now. And definitely not that any and all potential uses of the technology could be deemed ethically acceptable.
What we mean is this: in our view, heritable genome editing is not morally unacceptable in principle, and therefore there is no reason to rule it out altogether.
There are circumstances that we can foresee where there are good, moral reasons for its use. For example, for families affected by serious, life-limiting genetic diseases such as sickle cell anemia and cystic fibrosis, it might allow them to have a genetically related child free of the risk of that disease, especially in some rarer cases where there are no other existing methods for achieving this.
There are also, potentially, less good reasons to use genome editing, and at the heart of our report are concerns that the possibilities it raises could have significant impacts on individuals, families and on society. We must therefore have appropriate measures in place to secure a responsible path to innovation and, perhaps, uptake of this technology in a reproductive context.
Some of the media coverage about our report has asserted something along the lines of we ‘don’t rule out the possibility of using genome editing for selecting traits such as eye color, hair color and height’. We might counter that this is at best a misinterpretation, and at worst a deliberate sensationalist approach that does little justice to the much more nuanced discussion that our report promotes.
Firstly, it plays down the great uncertainty that exists over the sorts of things genome editing might be able to achieve, or how widely its use might one day extend. There is no one gene for intelligence or for athletic ability and most observable traits in humans are likely to involve complex interactions between different genes, or between genes and environmental factors. In short, our genes do not prescribe everything about who we are, and genome editing seems unlikely ever to be capable of controlling such characteristics.
Secondly, it casts aside one of the two ethical principles put forward in our report to guide the use of heritable genome editing interventions, namely that they should not increase disadvantage, discrimination or division in society. The other principle is that they must be intended to secure, and be consistent with, the welfare of the future person.
The safety of the technique itself is obviously an important consideration in welfare, given that uncertainty about the risks of unintended consequences, and the possibility of passing them on, is a concern for many people. The technology cannot yet be considered safe enough, and indeed it might never be.
But welfare is more than ‘good health’- it includes social and psychological wellbeing and it is dependent, to some extent on the circumstances in which people live. For example in the case of a person with a genetic disease (which might include disability or impairment), their welfare depends on their particular circumstances, including their physical and social environment, and the availability of healthcare and assistance.
We have carried out our inquiry over 20 months, and in the course of our deliberation we have taken views from many people, and we have heard strong moral arguments on all sides. Our ethical analysis takes into account of the interests of individuals who would be directly involved, and of others whose interest may also be affected.
Understanding the relationships between these interests, and the responsibilities of others to protect or enable these interests has allowed us to develop our two core ethical principles.
In unpacking these ethical issues, the context in which the reproductive goals and decisions of prospective parents are taking shape is significant. The ground is shifting with our increasing understanding of genomics and increasing access to our own personal genetic information. This new territory brings with it new reproductive decisions, responsibilities and expectations. Now is the right time to have a broad and inclusive debate, paying particular attention to the interests of the people and groups in society who are likely to be most affected if this were to be introduced. Importantly our report recommends that the technique should not be introduced before the risks of adverse effects for individuals, groups and society have been appropriately assessed, and measures are in place to monitor and review these and to impose a moratorium if necessary.
We can only make our regulatory recommendations to bodies in the UK, but of course that’s only one part of the picture. Countries around the world are having their own discussions about genome editing. It is our hope that this report will have resonance across the globe and that the UK can work actively and constructively with other countries to develop a framework that respects the values of different countries and that safeguards human rights.
For more information, please see the Nuffield Council on Bioethics report ‘Genome editing and human reproduction: Social and ethical issues’, available here. Alongside the in-depth report, a 13-page overview of the report is available to download or read on the Council’s website.
Dr Julia Kinder is a Down syndrome expert, national speaker, author, career consultant, fitness guru, and family practice physician. March 21st is World Down Syndrome Day, and we caught up with Julia to ask her how scientists, parents, and doctors can work together to benefit the lives of people with Down syndrome.READ MORE