Ethics of Reproductive Testing and Fetal Therapy

This SIG provides a forum for engagement, education, and support around ethical issues arising in reproductive testing and fetal therapy. Activities include preconference courses, input into guidelines, provision of resources and engaging with SIG members. This SIG welcomes collaboration with other SIGs within ISPD. This SIG aims to provide a platform for reflection on the ethics of the field and to enable professionals working in the prenatal environment to feel empowered to deal with ethical issues arising in their practice.

SIG Mission Statement 

To provide a platform for reflection on the ethics of the field. 

SIG Topics of Discussion/Interest

  • Ethical theory and concepts in reproduction
  • Ethics and prenatal screening
  • Informed choice and informed consent
  • Disclosure of incidental findings and the "right not to know"
  • Equity in access to services
  • Preconception screening
  • Ethics and fetal therapy

Preconference Course on Challenges in Prenatal Counseling 

Ethics is inherent to prenatal counseling and decision-making. There are well-versed debates over issues such as the moral status of the fetus, or maternal-fetal conflict. There are also increasingly sophisticated debates over concepts such as the meaning of disability, and notions of autonomy and choice in reproduction.

Norms such as non-directiveness underpin many professional actions in this field. However, some professionals may worry how they might raise an ethical issue without being directive. Others may feel they lack knowledge of ethics: is it all just subjective, with no right answers? 

As leaders of the Ethics and Genetic Counseling SIGs, we have been hearing that our members are keen to learn more about how to identify and critically reason around ethical issues. As a result, we have joined forces for an interdisciplinary preconference course for this year’s ISPD Conference that will address cutting-edge ethical and counseling challenges in prenatal testing. 

The course will help participants from a variety of professional backgrounds to develop practical reasoning skills regarding the challenges that arise in prenatal testing. It has been designed around three topics:

  1. Dealing with uncertainty
  2. Communicating about health, disability, and impairment
  3. Discussing what we mean by "serious"

The course’s learning objectives are geared towards helping participants to recognize when an ethical issue is arising, defining core ethical aspects, and applying ethical concepts. The three topics above will be discussed using a case, from both an ethics and counseling perspective. There will be ample time for audience participation.

We have put together a fantastic group of speakers, including Dr. Megan Allyse (Mayo Clinic, USA), Dr. Samantha Leonard (Natera), Professor Jackie Leach Scully (University of Newcastle, UK), Charlotta Ingvoldstad, CG (Center for Fetal Medicine, Karolinska University Hospital, Sweden), and Judith Jackson, MS (South Shore Hospital, MA, USA).

As the course is based around cases, we asked for the help of the ISPD professional community. Thank you to all who submitted descriptions of cases to enhance the content of this course! We look forward to presenting the course and to seeing you all in San Diego!

The Ethics of Reproductive Testing and Fetal Therapy SIG provides a forum for engagement, education and support around ethical issues arising in reproductive testing and fetal therapy. The Genetic Counseling SIG encourages the exchange of information and experience among professionals providing genetic counseling, as well as increasing international awareness of the profession.

SIG Leadership 

Chair:  Wybo Dondorp, PhD


Deputy Chair: Ainsley Newson, PhD

 
Board Liaison: Sylvie Langlois, MD, CCMG

Meeting Minutes

13 July 2016 - Berlin, Germany
11 July 2016 - SIGs and Education Committee
14 July 2015 - Washington, DC USA

Annual Reports

2015-2016