Ovarian Club X and CoGEN in Asia

SpeakerS

Vardit RAVITSKY(Canada)

Vardit Ravitsky, PhD, is Associate Professor at the Bioethics Programs at the Department of Social and Preventive Medicine of the School of Public Health, University of Montreal. She is Director of the Ethics and Health Branch of the Center for Research in Ethics. Ravitsky is an elected Board member and Treasurer of the International Association of Bioethics (IAB). She is a member of the Canadian Institutes of Health Research (CIHR) Standing Committee on Ethics and of the CIHR’s Institute Advisory Board on Research Excellence, Policy and Ethics. Ravitsky is member of the Quebec Reproduction Network (RQR) and the Canadian Fertility and Andrology Society (CFAS). Previously, she was faculty at the School of Medicine at the University of Pennsylvania.
Prof. Ravitsky's research focuses on reproductive ethics and the ethics of genetic and genomics research. Her research interests in bioethics also include research ethics and health policy. She is particularly interested in the various ways in which cultural frameworks shape public debate and public policy in bioethics. Her research projects are funded by CIHR, FRQSC, SSHRC, and Genome Canada. She published over 100 articles, book chapters and commentaries on bioethical issues, and is lead-editor of "The Penn Center Guide to Bioethics".

Abstract

Ethical and Social Issues of Pre-natal Genetic Testing

The introduction of cell-free Fetal DNA testing, or Non-Invasive Prenatal Testing (NIPT), is gradually changing the landscape of prenatal testing. By providing results that are more reliable than serum screening, earlier in the pregnancy and without increased risk of miscrriage, NIPT represents great benefits for pregnant women. It reduces the number of invasive diagnostic tests, and consequently reduces fetal losses. Empirical studies show that women are indeed very interested in the test.
NIPT is gradualy shifting from a second-tier screening test offered only for high-risk pregnancies, to a first-tier screening test for all pregnant women. It may, at some point, be recognized as a diagnostic test for certain conditions. The probable routinization of NIPT raises numerous ethical and social challenges.

The talk will address challenges related to: 1/ obtaining informed consent for a non-invasive screening test that poses no increased risk of miscarrage, in light of ongoing challenges surrounding consent for ‘traditional’ serum screening; 2/ a possible increase in detection of trisomy 21, leading to increased termination rate and as a result increased stigmatization of families raising children with special needs; 3/ the cost of NIPT as a barrier to access (since it is not publicly funded in most countries) and the associated equity and justice concerns; 4/ the global spread of NIPT and the unique cultural challenges associated with its offer in a variety of countries with different healthcare systems and different legal frameworks (related to pregnancy termination on one hand, and support for children with special needs on the other). 

The talk will conclude with a focus on expanded use of NIPT, from trisomies and specific genetic conditions, all the way to whole genome sequenceing. What conditions should be screened for? This decision is not only clinically challenging, but also ethically sensitive, as it depends on social values. How should pre-test counseling be conducted considering the complexity of offering screening for a variety of conditions, when the reliability of NIPT for each is different, and when the clinical implications of each presents different issues? How should results be communicated to allow women informed choice in a context where they might receive several results at the same time, each indicating a different level of risk? This talk will discuss these challenges as described in the bioethics literature, using examples from a Canadian national study (called PEGASUS) that explored the implications of introducing NIPT into the Canadian healthcare system.