DNA and Designing Babies: Two Conferences on Bioethics

In February, the Paris Center hosted two conferences that charted the complex, under-explored world of bioethics in relation to US policy, professional practice, law, and designer babies.

Sinéad McCausland
May 06, 2019

Karine Lefeuvre of EHESP (Ecole des hautes etudes en santé publique) worked with Dr. Robert Klitzman of Columbia University’s Joseph Mailman School of Public Health and David N. Hoffman of Columbia University’s Masters of Bioethics Program to organise these two conferences on bioethics.

Even with the two separate conferences, Lefeuvre, Klitzman and Hoffman finished each conference with an emphasis on the fact that there is still more to be discussed. The accelerating advancement of medicine and sciences and technology means that it is nearly impossible to keep up with the wide-ranging issues this will have on not only the law and on governmental issues, but also on the individual person.

The collaboration between EHESP and Columbia University began with an insight into bioethics in the United States. Titled ‘Bioethics in the United States: An Overview of Policy and Impacts on Professional Practice’, the first conference saw Lefeuvre animate discussion between Klitzman’s knowledge of how advancements in the sciences and in technology affect our DNA and our data as well as the genetics of one’s family. Hoffman’s experience in law provided a chance for discussion on the difficulties that arise when technology advances but the law stays the same.

Klitzman highlighted that the issue of bioethics has been in the news for a while, for example coverage of embryonic stem cell research and the ethical issues that surround biological research such as testing on animals. Klitzman continued to discuss the history of bioethical issues, noting that Nazi soldiers in Europe would leave people in concentration camps in the cold and measure how long it took them to die. As Klitzman moved into modern times, however, it became clear that bioethical issues have become more complex as technology has shifted, developed, and changed form. Klitzman noted that the cost of DNA has gone down because many people are getting genetic testing done, be it to discover their family trees or to see their cultural heritage, meaning that companies have more DNA and therefore DNA is now cheaper to sell because it’s easier to get.

The availability of DNA is not just a problem of cost, either, but also of data and privacy. Klitzman emphasized that criminals have been found because of their DNA, and whilst this sounds good for the present day, in the future this could turn into something more sinister if authorities use their knowledge of criminal DNA to observe those with similar genetics who have not yet committed a crime.

Klitzman’s observations on the availability of DNA and the use of DNA for data mining came one month before HBO released their documentary on Theranos CEO Elizabeth Holmes, titled ‘The Inventor: Out for Blood in Silicon Valley’. Modeling herself on Steve Jobs in both backstory and aesthetics, Holmes wanted to revolutionise medicine in the US through what was then her nine billion dollar company. Holmes created ‘Edison’, a blood testing device that could allegedly diagnose a person in two minutes from 200 conditions with just a drop of blood. Holmes’ invention was, of course, a sham, but her rise and fall is a high scale example of the amount of money, greed, and risk involved in the world where technology and medicine become one.

As technology and medicine advance together, questions arise of what we do with the information gained from DNA. Genes can and often are being associated with certain talent and abilities, for example educational engagement, weight, and musical ability. Klitzman argued that this association between genes and ability as ridiculous, but the perpetuation of this myth means more and more people who opt to have genetic babies are designing the genes in order to pre-determine the ability of their soon-to-be baby. There are also, Klitzman noted, biases in algorithms related to genes and gene coding, particularly in terms of racial biases. This algorithmic bias is something the U.S. Representative for New York’s 14th district Alexandria Ocasio-Cortez has pointed out, stating, and backed by scientists, that algorithms and facial recognition technology are racist. This calls into question not only how algorithms and technology should be changed in order to comprehend DNA and people equally, but more importantly who changes the algorithms. If algorithms continue to be created and worked on by white people, mostly men, then we will run into the same problems in the future.

Hoffman’s talk highlighted issues that would be explored in the second part of the conference, ‘Designing Babies’. Hoffman gave examples of ethical cases that he has dealt with or heard of, including one of a woman who was ordered to give embryos to her husband because they had insurance coverage on the embryos. According to Hoffman, in Arizona the legislation stands that the embryos go to whoever wants to bring them to term. Considering the United States are still dealing with arguments over the legality of abortion, it’s worrying that those who do not create the embryos are given as much rights to the cells as the women who do. Through this logic, the embryonic cells have the same, if not more, rights than the human woman.

For his talk for the second part of the collaboration between EHESP and Columbia, Klitzman focused on the buying and selling of eggs. According to Klitzman, there are only three countries in the world where you can buy and sell eggs: India, Russia, and the US. Whilst, as Klitzman observed, the buying and selling of eggs may seem like a positive thing for those who can’t have children or for lesbian and gay people, the market-sharing of eggs creates more problems than it solves. Not only does it discourage people from adopting children, but the buying and selling of eggs brings up ethical questions of who chooses if the child is a boy or a girl, of whether to alter its genes, of who ‘created’ the child, and, most worryingly of all, of nuclear farming -- babies could potentially be mass-produced in laboratories.

Both conferences’ discussions focused on the use and purposes of embryos from a nuclear familial perspective. This focus on a two-parent rather than one-parent household signals another sign of the problem of ‘designer babies’: the idea that only a certain kind of person with a certain kind of lifestyle and amount of money is allowed to have a child.

Klitzman closed the two conferences with an emphasis that there needs to be more regulation on the use of embryos, on who can use them, and on who it is that decides on this regulation. However, what the two conferences showed is that as technology and medicine advance together, there is a worrying attempt to distance ourselves from the fact that we are born from the womb to being born inside of a laboratory. Rather than being used to help infertile women who want to have children, the advancement of the biological sciences and of technology seems to be an attempt to help men monopolise and create a sinister, artificial birthing industry away from the womb.