Prenatal Information Research Consortium

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

[Read the full report here.]

“We are human because of the interplay of many biological, historical, and cultural determinants, which preserve the feeling of our fundamental unity and nourish the richness of our diversity. This is why the human genome is one of the premises of freedom itself and not simply raw material to manipulate at leisure. Scientific advancements in this field are likely to offer unprecedented tools against diseases. Therefore, it is crucial to acknowledge that these opportunities should never become the privilege of the few. What is heritage of humanity entails sharing both responsibilities and benefits.” (pg 4)

Continue reading Summary: Report of the IBC on Updating Its Reflection on the Human Genome and Human Rights

PIRC researchers are well-represented at this year’s ASBH meetings in Houston (October 22-25, 2015). If you’ll be attending, you can find us at the following sessions:

Continue reading See you at ASBH 2015!

We had such an amazing day at our Stakeholder Perspectives in Noninvasive Prenatal Screening Symposium in July, held in conjunction with the 2015 ISPD (International Society for Prenatal Diagnosis) meetings. Indeed, we’re still processing all the great information and discussions of that day, and hope to produce some more cohesive thoughts on it in a publication or two. Meanwhile, here are few photos – if you have more, please share!