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).
“Advocacy groups often devote considerable time and resources to helping patients understand prenatal screening results,” the article notes. Yet Victoria Miller, Executive Director of the Trisomy 18 Foundation, along with other patient advocates, has expressed frustration that “[C]ommercial testing labs, which expend considerable resources on marketing highly profitable tests, subsequently rely on non-profit PAGs with already overcommitted time and over-extended resources to help customers assimilate and follow up on test results.”
In addition to funding disparities, PAGs also face other challenges, including a lack of access to training and genetic counselors to help them as they educate potential parents about their prenatal test results. While PAG representatives have expressed their appreciation that doctors and testing laboratories increasingly refer patients to them, these referrals haven’t usually been accompanied by funding or collaborative support for their efforts. One suggestion that emerged from our Stakeholders Symposium last year was “that a clearinghouse organization might be developed to receive funds from multiple testing companies and distribute them to individual organizations and/or multi-organization collaborative efforts to support and inform expectant parents.” Collaborative efforts like these could help PAGs in their important work of supporting parents and potential parents who receive screen-positive results.
Meredith, Stephanie, Christopher Kaposy, Victoria J. Miller, Megan Allyse, Subhashini Chandrasekharan, Marsha Michie, on behalf of the Prenatal Testing PAG Coalition. (2016) Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States. Prenatal Diagnosis 36 (8): 714-719. PubMed ID: 27244688. (If you’d like a preprint copy of the article, just contact us.)