I came across this provocative critique on the role of the Human Fertilisation and Embryology Authority (HFEA) in regulating reproduction in the UK. I will have another blog post with my thoughts later, but thought I would set the table now by sharing the article:
One of the great success stories of British science in the last 30 years was the introduction of In Vitro Fertilisation by Steptoe and Edwards in 1978. They should have won the Nobel Prize. Around 3% of babies are now born after IVF. Testing of and experimentation on early human embryos offers great prospects for improving not only the health of the next generation but how well their lives go. Today, a wide variety of genes which cause or contribute significantly to disease can be tested. Soon, it will be possible to test for all the genes an embryo has and choose embryos which start life with the least prospects of disease and greatest range of talents, abilities and capacities. And IVF has allowed individuals and couples to have children in new ways, expanding procreative liberty. Experimentation on embryos is yielding important knowledge of human development and contributing to the development of regenerative medicine, or stem cell therapies.
Assisted reproduction, including embryo testing, and research involving the embryo has been controlled by the Human Fertlisation and Embryology Authority (HFEA). I recently wrote an evaluation of the performance of the HFEA. I argued that the HFEA was set up on the wrong premise: the embryo was said to have a special moral status. Regulation should be set up on the basis of preventing real, tangible and direct harm. Destroying some embryos but not others is not an example of preventing harm. Secondly, it has operated to enforce public morality, imposing moralism not preventing harm. This was kind of objectionable moralism that was employed by Lord Devlin to justify a ban on homosexuality. Thankfully, HLA famously disposed of that bad justification, at least in the case of homosexuality. Moralism, however, has been alive and well in the case of reproduction.
Here are some examples:
1. Only allowing genetic testing for major genetic disorders and not minor genetic disorders
2. Not allowing genetic testing for the genetic dispositions to talents, capacities, abilities
3. Not allowing testing for sex, except to detect major sex linked conditions. Sex is not even divulged when it has been tested as a part of testing for genetic disorders. The doctors know but the parents don’t!
4. Not allowing testing for carrier states.
5. Not allowing gay or single people to use assisted reproduction.
6. Setting age limits for the use of assisted reproduction
7. Not allowing freezing of eggs or embyros for lifestyle reasons, such as delaying child bearing for career reasons.
8. Not allowing the creation of savior siblings.
9. Not allowing people to use gametes or embryos of people who have died.
10. Restricting the methods of creation of embryos for research which will be destroyed.
This is just a list off the top of my head. I am sure there are others. But 10 is such a nice round number. The HFEA has limited liberty in all these ways, at one time or another. In most of these cases, it still adopts a moralistic, liberty-infringing position.
Regulatory bodies like the HFEA were set up in part to reassure the public that technology was not moving too fast. The first regulatory body, the Infertility Treatment Authority, was set up in 1984 in my own state of Victoria. It has functioned in the same moralistic way as the HFEA. Interestingly, the neighbouring state, NSW, never set up a regulatory authority. It has continued to function perfectly well. Indeed, for a period, Sydney IVF even offered sex selection before the weight of oppressive conservative moral norms effectively shut that down.
Do we need regulatory authorities like the HFEA to reassure the public at times of rapid technological change? Technology in so many areas, biotech, nanotech, information tech and the neurosciences is now developing at an exponential rate, far faster than ever before. It is simply impossible to set up regulatory authorities as a measure of reassurance. And historically, as the HFEA has shown, they serve as conservative moralistic brakes or shackles.
We need to rethink the relationship between regulation and technological change. I hope that the end of the HFEA is the end of moralistic regulation. We need to focus our limited resources on preventing serious harm through the premature introduction of unsafe technology or the misuse of powerful technology to harm people.
In that opinion piece, I argued there is a need to curtail liberty in the employment of the new reproductive technologies but it should use principles that minimize harm, different to those which have been employed by the HFEA.
Firstly, interventions should be reasonably safe. One thing the HFEA should have done was require audit and follow up of every baby born by IVF to evaluate the long term safety of this procedure. This was not done and so we don’t today have as comprehensive safety data as we could have had on IVF or PGD.
Secondly, we have a responsibility to ensure that exercise of individual liberty does not cause direct harm to others. For example, parents should not be free to choose in favour of psychopathic or extremely aggressive tendencies (should these be identified), no matter how great the benefit to the child produced.
Thirdly, public access to technology should be distributed according to principles of justice. This however, should only apply to whether to procedure is publicly funded. It should not prevent citizens exercising their liberty to pay privately for procedures which are safe and don’t harm others.
Moral disapproval is a poor basis for legislation and regulation. Our regulatory authorities should focus on preventing clear examples of harm. Protection is what we should expect from our public institutions, not moral approval.