Genetic Counseling, Ethics, Patient Education Special Interest Group 

Lynn Bush, PhD, MSBioethics, MA
Samantha Stover, MS, CGC
Co-Chairs, Genetic Counseling, Ethics, Patient Education SIG

All ISPD 2024 attendees, in-person and virtual, are most welcome to attend the Genetic Counseling-Ethics-Patient Education Special Interest Group’s interactive morning coffee/tea discussion forum: "Reproductive Freedom? The ripple effect of global policies on complex counseling conversations, decision-making, and the patient/provider relationship.”  (see program on Tuesday, 9 July)

We will engage in vibrant conversations with panelists and audience regarding how global reproductive rights policies can create ethical dilemmas for both patients and providers as well as significantly impact patient counseling, education, and the patient/provider relationship – whether considered for better, or worse. There will be an interdisciplinary panel of speakers from across the globe,to include Mahesh Choolani, MD, PhD, Dora Mayen, MD, PhD, April Adams, MD, and others. (i.e., patient advocate), with representation from members in a variety of geographical areas and with diverse perspectives in both areas with protective laws and those without, with planned audience discussion.

Additionally, we extend a warm welcome to all ISPD members and invite you to join the Genetic Counseling-Ethics-Patient Education Special Interest Group. We plan to have Special Interest Group activities throughout the year and hope you will participate with new insights!

In the meantime, we offer some articles of potential interest:

https://pubmed.ncbi.nlm.nih.gov/38410885/- (US based programs)
Sanchez G, Hashmi SS, Bednar E, Horvath S, Kumar B, Sagaser K, Singletary CN, Ramdaney A. Status of abortion curriculum in genetic counseling: Survey of graduate programs and recent graduates in the United States. J Genet Couns. 2024 Feb 27. doi: 10.1002/jgc4.1875. Epub ahead of print. PMID: 38410885.

  • https://pubmed.ncbi.nlm.nih.gov/38425099/
    Rankin HA, Voegtline K, Olson S, Sufrin C. Termination counseling among US perinatal genetic counselors in the setting of second trimester fetal anomalies. J Genet Couns. 2024 Feb 29. doi: 10.1002/jgc4.1888. Epub ahead of print. PMID: 38425099. (US; a nice F/U to that other study on how more formalized education is needed)
  • https://pubmed.ncbi.nlm.nih.gov/38348952/ (Denmark)
    Raaby L, Lou S, Lodberg Ivarsen RR, Sørensen J, Larsen OH, Vogel I. Has the introduction of increased genetic prenatal testing affected rates of termination of pregnancy due to fetal abnormality? Prenat Diagn. 2024 Mar;44(3):280-288. doi: 10.1002/pd.6526. Epub 2024 Feb 13. PMID: 38348952.
  • https://pubmed.ncbi.nlm.nih.gov/38158591/(US based, with a large portion of study population underrepresented in research)
    Rothschild HT, Lianoglou BR, Sahin Hodoglugil NN, Tick K, Brown JEH, Sparks TN. Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies. Prenat Diagn. 2024 Mar;44(3):263-269. doi: 10.1002/pd.6507. Epub 2023 Dec 29. PMID: 38158591; PMCID: PMC10947859.
  • https://pubmed.ncbi.nlm.nih.gov/38323428/(US and Canada)
    Cunningham E, Hays S, Wainstein T, Zierhut H, Virani A, Tryon R. Exploring genetic counselors' experiences with non-paternity in clinical settings. J Genet Couns. 2024 Feb 7. doi: 10.1002/jgc4.1881. Epub ahead of print. PMID: 38323428.àconsiders ethical piece of this as well
  • https://pubmed.ncbi.nlm.nih.gov/37155245/(TN specific)
    McCarthy AM, Boos EW, Anani UE, Clayton EW. Ethical Conflicts for Clinicians under Tennessee Abortion Law. N Engl J Med. 2023 May 11;388(19):1735-1737. doi: 10.1056/NEJMp2303213. Epub 2023 May 6. PMID: 37155245.
  • https://pubmed.ncbi.nlm.nih.gov/38342778/(US plus Germany)
    Chervenak F, McLeod-Sordjan R, Moreno JD, Pollet S, Bornstein E, Dudenhausen J, Grünebaum A. The importance of professional responsibility and fetal viability in the management of abortion. J Perinat Med. 2024 Feb 12;52(3):249-254. doi: 10.1515/jpm-2023-0503. PMID: 38342778.
  • https://pubmed.ncbi.nlm.nih.gov/38069681/(US)
    Hendriks S, Althaus J, Atkinson MA, Baschat AA, Berkman BE, Grady C, Wasserman D, Wendler D, Miller JL. Precarious hope: Ethical considerations for offering experimental fetal therapies outside of research after initial studies in humans. Prenat Diagn. 2024 Feb;44(2):180-186. doi: 10.1002/pd.6474. Epub 2023 Dec 9. PMID: 38069681; PMCID: PMC10932810.