Data on Genomics and Genetics Reported by Researchers at University of Montreal (Governing the Futures of Non-invasive Prenatal Testing: an Exploration of Social Acceptability Using the Delphi Method): Genomics and Genetics

2022 NOV 07 (NewsRx) -- By a News Reporter-Staff News Editor at Insurance Daily News -- Current study results on Genomics and Genetics have been published. According to news reporting originating in Montreal, Canada, by NewsRx journalists, research stated, “Non-invasive prenatal testing (NIPT) using cell-free DNA (cfDNA) offers numerous benefits to pregnant women and their families. It also raises ethical, legal and social concerns regarding, for instance, the possible effects of a routinization of prenatal genetic testing on free and informed decision-making by prospective parents, and the role of the state in governing its use.”

Funders for this research include Fonds du Quebec pour la recherche - Sante et Culture (FQRSC), Canadian Institutes of Health Research (CIHR), Centre de recherche enethique (CRE).

The news reporters obtained a quote from the research from the University of Montreal, “Technological advances are allowing cfDNA analyses to detect an increasing number of genetic risks and conditions in the fetus, potentially further exacerbating such concerns. From May 2015 to December 2016, we conducted a three-round Policy Delphi study (N-R1 = 61, N-R2 = 58, N-R3 = 47; overall retention rate = 77.0%) to explore the social acceptability (SA) of current and potential future uses of NIPT in Canada according to participants with relevant professional, research or advocacy expertise. Participants came from four groups: healthcare professionals (N-R3 = 14), social sciences and humanities researchers (N-R3 = 13), patients/disability rights advocates (N-R3 = 14), and cultural/religious communities advocates (N-R3 = 6). This paper presents SA criteria and contextual contingencies relevant to the assessment of NIPT’s SA according to the group. It also reports what uses (conditions or motives) participants thought should be banned, permitted, publicly funded, or promoted as a public health strategy. According to them, conditions resulting in severe pain or early death, as well as trisomies (13, 18, 21) and sex chromosome abnormalities, should be covered by Canadian public health insurance. However, there was wide agreement that direct-to-consumer NIPT should be legally banned, and that testing for fetal sex for non-medical reasons using NIPT should be either proscribed or discouraged. In addition to identifying areas of consensus, our results point to disagreement regarding, for instance, the required level of governance of whole-genome sequencing and testing for late onset conditions with low penetrance.”

According to the news reporters, the research concluded: “This study also provides a model for exploring the SA of emerging technologies using the Policy Delphi method.”

This research has been peer-reviewed.

For more information on this research see: Governing the Futures of Non-invasive Prenatal Testing: an Exploration of Social Acceptability Using the Delphi Method. Social Science & Medicine, 2022;304. Social Science & Medicine can be contacted at: Pergamon-elsevier Science Ltd, The Boulevard, Langford Lane, Kidlington, Oxford OX5 1GB, England. (Elsevier - www.elsevier.com; Social Science & Medicine - http://www.journals.elsevier.com/social-science-and-medicine/)

Our news correspondents report that additional information may be obtained by contacting Charles Dupras, University of Montreal, School of Public Health, Dept. of Social and Preventive Medicine, Bioeth Programs, 7101, Parc Ave, Montreal, Pq H3N 1X9, Canada. Additional authors for this research include Stanislav Birko, Aliya O. Affdal, Hazar Haidar, Marie-Eve Lemoine and Vardit Ravitsky.

The direct object identifier (DOI) for that additional information is: https://doi.org/10.1016/j.socscimed.2020.112930. This DOI is a link to an online electronic document that is either free or for purchase, and can be your direct source for a journal article and its citation.

(Our reports deliver fact-based news of research and discoveries from around the world.)