Author: Marsha Michie

PIRC collaborator Subhashini Chandrasekharan is quoted in an article released today on GenomeWeb: “With Rapid Uptake of Noninvasive Prenatal Screening, Many Question Its Impact on Abortion” (free registration required to access). GenomeWeb reporter Monica Heger notes that noninvasive prenatal screening (NIPS), “one of the fastest adopted clinical tests,” is now becoming a routinized part of prenatal care worldwide. Many abortion opponents have assumed this new technology will result in a huge increase in abortions, but the data are not nearly so clear. Chandrasekharan says,

“The immediate jump from yes we’ll be able to detect more genetic abnormalities prenatally, and, yes, therefore more people will terminate the pregnancy, that’s where I have doubts.”

Continue reading Impact of NIPS on abortion? It’s complicated

PIRC member Ainsley Newson‘s new article in BioNews (August 30, 2016) argues that, though the proposed stepwise implementation of NIPT in the UK makes sense in many ways, some ethical issues remain. (The UK National Screening Committee has recommended implementing NIPT as part of the national antenatal screening programme, but no official decision has been issued.) Continue reading Ainsley Newson on NIPT ethical issues

We’re happy to announce that PIRC member Stephanie Meredith is the first author on a new publication in Prenatal Diagnosis. In collaboration with several PIRC members and others, Stephanie has written an article exploring the challenges that prenatal cfDNA screening has posed to non-profit patient advocacy groups (PAGs). Continue reading Patient non-profits impacted by cfDNA screening

by Stephanie Meredith

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.

Continue reading Life with Turner syndrome: Education and support are essential

Robert Resta recently discussed the issue of genetic counselors who have financial conflicts of interest, in a blog post called Appearances are Important. His is a useful response from the genetic counseling profession to Beth Daley’s recent article, After Angry Moms Fault Counseling, Genetics Society Cites Its Ethics Code. Continue reading Conflicts of interest and appearances

We are happy to have a featured commentary in this week’s BioNews. This week’s issue of BioNews features a summary of our December workshop at the Brocher Institute. That workshop gathered experts from around the world to discuss the global implementation of cfDNA screening, also known as NIPT.

Key issues that emerged in our workshop are described in the BioNews article, including:

• Informational needs;
• Commercial pressures;
• Economic realities;
• 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!

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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