In a recent article, “POV: My Life with Turner Syndrome (TS): Genetic screening does not necessarily predict the future,” Caitlin Bawn writes about her experience growing up with TS and her concerns about screening that can detect the condition prenatally. She worries that pregnant women undergoing prenatal screening will not receive information about the spectrum of outcomes for girls with TS as they are making reproductive decisions. While Bawn’s story focuses on Turner syndrome, she touches on a key issue with prenatal screening for a range of conditions as increasing numbers of expectant parents and providers are put in the position of figuring out what a diagnosis means.
We are happy to be well-represented at this year’s national meeting of the American College of Medical Genetics and Genomics (ACMG). Swing by our posters and say hello!
Thursday poster session: Poster #437
The National Center for Prenatal and Postnatal Resources: Evaluating the progressive annual utilization of a recommended patient education resource two years after the release of the 2013 ACMG statement on noninvasive prenatal screening for fetal aneuploidy
Key issues that emerged in our workshop are described in the BioNews article, including:
Cultural diversity; and
Access to abortion.
The article was authored by the six co-organizers of the workshop, who are all PIRC collaborators: Vardit Ravitsky, Jessica Mozersky, Marsha Michie, Rayna Rapp, Megan Allyse, and Subhashini Chandrasekharan.
We look forward to disseminating more of the great information, discussion, and policy work that took place at our workshop in the coming months, so stay tuned!
We are so honored to have spent the last three days at the Brocher Foundation with international experts, discussing ethical and social aspects of NIPT as it is being implemented globally. Ethicists, clinicians, lab scientists, and social scientists have shared local knowledge and global ideas, and we have all learned a tremendous amount! This morning as we wrap up our workshop and look forward to next steps, we thank all the participants who traveled from near and far, and are happy to report that this is clearly the beginning of many fruitful collaborations and projects.
Below see a few photos we’ve captured over the past few days. More coming soon!
Several PIRC members are spending this week at the Brocher Foundation in Switzerland, where we have organized a workshop on “Non-invasive Prenatal Testing in the Non-Western Context.” After 18 months of planning, we are so pleased that this workshop has finally come to fruition. Representatives from all over the world will be spending the next four days discussing ethical, legal, and social issues that arise from the global spread of cfDNA screening, particularly as it affects low- and middle-income countries.
We will post photos and updates as the workshop progresses!
So many acronyms! Our consortium of researchers was well-represented last week at the national meetings of NSGC (the National Society of Genetic Counselors) and ASBH (the American Society for Bioethics and Humanities). Continue reading PIRC at ASBH and NSGC