No.27 From Avoiding Disease to Designing Life: Ethics and the Future of Human Genome Editing & Ethics, Regulation and Beyond: Policy Aspects of Research with Pregnant Women
Time:2019-12-30        Views:50

On 9th December 2019, the Institute for Global Public Policy (IGPP) held the 27th event of the Fudan-LSE Lecture Series in Room 403, West Sub Building of Guanghua Tower at Fudan University. Jeffrey Kahn, professor at Johns Hopkins University delivered the lecture “From Avoiding Disease to Designing Life: Ethics and the Future of Human Genome Editing”. Anna Mastroianni, professor at the University of Washingtondelivered the lecture “Ethics, Regulation and Beyond: Policy Aspects of Research with Pregnant Women”. Professor Yijia Jing, dean of IGPP, chaired the lecture.

Professor Jeffrey Kahn delivered the first lecture. Jeffrey Kahn is the Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics, and the Levi Professor of Bioethics and Public Policy. He is also a Professor in the Department of Health Policy and Management in the Johns Hopkins University Bloomberg School of Public Health. He is an elected member of the National Academy of Medicine and Fellow of the Hastings Center.

Professor Jeffrey Kahn discussed the ethical and governance issues in genome editing by providing three cases. The first case was about Molly and Adam, the Savior Siblings. Adam, born at the Reproductive Genetics Institute in Chicago, was created to obtain the hematopoietic tissue necessary to treat his sister Molly, who suffered from a rare genetic disorder called Fanconi Anemia. After failing to conceive naturally, Morley’s family tried the third generation of In Vitro Fertilization (IVF), also known as Preimplantation Genetic Diagnosis (PGD), and finally succeeded in obtaining matching embryos after five cycles. Adam was then born and the stem cells from his blood were successfully transplanted to Molly through the umbilical cord 100 days after his birth. The case had provoked a strong reaction in American society and was written into books. Professor Jeffrey Kahn analyzed the ethical and governance implications of the case. He pointed out that the motivations for people to have children were naturalness, inheritance, the companionship of siblings, contingency, sharing of family work and responsibilities, among others. He believed that, in this case, the purpose of designing babies is to obtain better physical features, avoid and prevent diseases, and select disease-free traits. However, the PGD technology is controversial, including how to decide what physical characteristics should be accepted or rejected, the limitations of accessible genes, and the fact that the purpose of the genetic design technique is to benefit everyone but the baby. All those questions have led to research and discussion on ethical challenges and governance gaps in practice.

The second case was about Mitochondria Replacement Technique (MRT) to avoid family genetic diseases. The technique is also named as “three-parent baby”, in which the reconstructed oocyte of two mothers is combined with the father’s cell to obtain the target DNA receptor. So far, the controversial technology has only gotten approved and legal in the UK, and U.S. Food and Drug Administration has not allowed the technology to enter the market.

The third case was about the genome editing of “CRISPR babies”. He Jiankui, an associate professor at Southern University of Science and Technology, announced the birth of two gene-edited babies in China in November 2018, one day before the Second International Summit on Human Gene Editing. The germ cell nucleus (CCR5) of the twin sisters, Lulu and Nana, was edited by CRISPR/Cas9 genetic scissors during their embryo formation. In all, 16 of 22 embryos were edited, and 11 embryos were used in six implant attempts before the twin pregnancy was achieved. The two twin girls were then born with modified genes to make them HIV immune. They are the world’s first gene-edited babies immune to AIDS, and the gene editing was not motivated by the treatment or prevention of an inherited disease, but to give the twins the ability to resist future HIV infection. This case has been unanimously criticized throughout the world. Professor Jeffrey Kahn stated that the technology applied for gene editing and modification of embryonic cells was not mature and He’s case did not comply with the international ethical norms for human genome editing. From both science and social ethics perspectives, practices on human genome editing are extremely irresponsible unless the  relevant safety, ethical, and regulatory issues can be well resolved in the future.

Professor Anna Mastroianni delivered the second lecture. Anna Mastroianni is Professor of Law at the University of Washington (UW) School of Law and Associate Director of UW’s Institute for Public Health Genetics. She serves on national and international consensus, advisory, and oversight committees, including those at the U.S. National Academies of Sciences, Engineering and Medicine and National Institutes of Health.

Professor Anna Mastroianni’s speech consisted of three sections. The first section was about the pregnancy paradox in maternity policy research. The second was about the governance of maternity policy, including international ethics guidance, regional and national regulatory approaches, and practices. The third section was about the observations and conclusions of her research.

Professor Anna Mastroianni first introduced the paradox of pregnancy. She mentioned pregnant women normally face the same health issues as non-pregnant women, while pregnant women are more susceptible and need to take drugs that affect their pregnancy. Research on drugs for pregnant women is more about protecting fetuses, not the mothers. In reality, drugs given to pregnant women are not tested on pregnant women, which may expose mothers and fetuses to unknown risks. She then present the categories and statistics of drug use by pregnant women and compared them with non-pregnant women. In the section on policy governance, Professor Anna Mastroianni analyzed the cases from Latin America and the United States based on International ethical guidelines for health-related research involving humans (CIMOS). She stated that regulatory approaches do not need to fully replicate international ethical standards and norms, but can be formulated according to regional and technical conditions.

Professor Jeff Kahn and professor Anna Mastroianni had a heated discussion with the audience and took a group photo with all the audience present at the lecture.