TY - JOUR
T1 - Follow-up in the field of reproductive medicine
T2 - an ethical exploration
AU - Jans, Verna
AU - Dondorp, Wybo
AU - Bonduelle, Maryse
AU - de Die, Christine
AU - Mertes, Heidi
AU - Pennings, Guido
AU - de Wert, Guido
N1 - Copyright © 2020 The Author(s). Published by Elsevier Ltd.. All rights reserved.
PY - 2020/12
Y1 - 2020/12
N2 - RESEARCH QUESTION: What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)?DESIGN: Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns.RESULTS: According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation.CONCLUSIONS: From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in follow-up studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research.
AB - RESEARCH QUESTION: What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)?DESIGN: Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns.RESULTS: According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation.CONCLUSIONS: From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in follow-up studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research.
UR - http://www.scopus.com/inward/record.url?scp=85091215734&partnerID=8YFLogxK
U2 - 10.1016/j.rbmo.2020.08.033
DO - 10.1016/j.rbmo.2020.08.033
M3 - Article
C2 - 32967810
VL - 41
SP - 1144
EP - 1150
JO - Reproductive BioMedicine Online
JF - Reproductive BioMedicine Online
SN - 1472-6483
IS - 6
ER -