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

Recent Developments in Prenatal Care and Ethics

We in the prenatal ethics community have been closely following recent developments in prenatal screening, diagnosis, and therapy. One item that has received a great deal of ethics attention has been a proposal for “reflex screening,” which would reserve a portion of a patient’s blood sample from serum screening and, in the event of a screening result that indicated an elevated risk, "reflexes" the sample for cfDNA screening. Patients would not be notified until results had been returned from both screens. The principal investigators of the study have argued that reflex screening represents an improvement over typical contingent screening protocols, avoiding patient distress in cases where a false positive serum screen can be ruled out after cfDNA screening. However, responses from bioethicists have been less enthusiastic. Of particular concern is that women are making a decision to undergo genetic screening before they know their serum screen results. As many practitioners know, women often make very different decisions in light of high-risk results. Catherine Joynson of the Nuffield Council on Bioethics recently argued that “the reflex model may not provide women with enough opportunity for discussion and reflection,” inhibiting informed decision-making about cfDNA screening. Similarly, Vardit Ravitsky of the Bioethics Program at Université de Montréal writes that reflex screening “is a step towards the 'routinization' of prenatal screening” and “faces enormous challenges regarding informed consent.” These responses suggest that reflex screening may pose challenges for ongoing efforts to improve standards of patient education and informed consent for prenatal screening. 

Also in the news recently is the first baby born in the United States from a transplanted uterus. The baby boy was born on December 1 at Baylor University Medical Center in Dallas, Texas. The uterus was donated by a volunteer named Taylor Siler, a registered nurse with two children, who has no connection to the couple. “I have family members who struggled to have babies, and it's not fair,” Siler told reporters. “I just think that if we can give more people that option, that's an awesome thing.” However, some bioethicists think more research needs to be done before the procedure is normalized. Writing in the Hastings Center Report, Christie Cole Horsborough argues “that empirical data exploring prospective recipients’ motivations and their perceptions of the benefits of the procedure in the context of their lived experiences are critical to a robust analysis of the ethical dimensions of uterine transplantation.” 

Educational Initiatives

In other news, the Ethics Special Interest Group is pleased to announce that we will once again be partnering with our friends in the Genetic Counseling Special Interest Group to offer a preconference course for the 2018 Annual Meeting of ISPD in Antwerp. The half-day course will focus on international variation in law, culture, and medical practice and how it affects prenatal care practice. As with last year’s course, it is designed as an interactive, case-based discussion that will draw on the experience and knowledge of participants and their day-to-day practice. Local discussions will be guided by subject and geographic area experts, and participants will rotate among them to explore a variety of perspectives. We hope that participants from a broad sample of geographic and sociocultural contexts will help generate a lively and mutually beneficial discussion among all participants. 

A recording of last year’s pre-conference course, “Ethics in Genetic Counseling,” is now available through ISPD at a discounted price for members. If you were unable to attend, this may be a great resource for you.

Finally, as we mentioned at last year’s SIG meeting, we have been encouraged to develop online resources for ISPD members. We are considering ideas for potential online training courses and webinars that could offer educational credits, and welcome suggestions as we move forward in this area. If you have an idea or a question you’d like to see developed into an online resource, please let us know--and if you would like to work on this project, we welcome input and collaboration. 

Best Wishes for the New Year,
Megan and Marsha

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. 

February 2017

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. 

Meeting Minutes

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

Annual Reports

2015-2016