Study estimates population & prevalence of Down syndrome in nine U.S. states

As part of their series of studies reviewing demographic statistics to estimate prevalence and total population of individuals with Down syndrome, Dr. Brian Skotko and his team of researchers have now delved into the numbers for nine specific states. Based on their analysis, while pregnancies positive for Down syndrome are at an all-time high, the number of babies born has plateaued with the introduction of prenatal testing.  Continue reading Study estimates population & prevalence of Down syndrome in nine U.S. states


PIRC at “the center” of bioethics

Marsha Michie, Megan Allyse, and Jessica Mozersky at ASBH

Hello from Kansas City, the geographical center of the US, where the American Society for Bioethics and Humanities is holding its annual meeting! Several PIRCers are here presenting research and learning from colleagues in bioethics.

Michelle McGowan is speaking on reproductive ethics to the Reproduction Affinity Group of ASBH, Saturday October 21st at 6pm. Marsha Michie is delivering a paper, “Scaffolding Translation: A Model for Ethical and Social Guidance of Translational Genomic Medicine,” Saturday at 2pm, based on her research on prenatal cell-free DNA screening. Jessica Mozersky and Stephanie Kraft are speaking on other topics: Jessica on “How Do Clinical Research Coordinators Actually Gain Knowledge of Good Clinical Practice?” Sunday at 11am, and Stephanie as part of a panel on “Beyond the Therapeutic Misconception: The Challenges of New Misconceptions About Research,” Thursday at 4pm.

You can peruse the whole program for the 2017 ASBH meetings at

PIRC at ACOG 2017

Megan Allyse is representing PIRC at the 2017 annual meeting of the American Congress of Obstetrics and Gynecology (ACOG) in San Diego, with a poster presenting preliminary findings from the ERRORS (Errors in Reading and Reporting On Results of Screening) study. She presented the ERRORS poster, titled “Decisional Regret in Women Receiving High-risk or Inconclusive Results from Non-invasive Prenatal Genetic Screening,” in ePoster Session B on Saturday (Poster 24B).

She is also presenting a poster on ethical considerations in uterine transplantation surgery, in ePoster Session P on Tuesday (Poster 30P). Congratulations Megan!

Full program for the ACOG 2017 annual meeting.

Mandating designer babies?

Technology for genetic modification has leaped forward in the past few years–thanks largely to the discovery and development of CRISPR, a new method of using bacterial enzymes to target and precisely cut DNA. In the wake of these developments, a recent article in The Atlantic asks, “Will Editing Your Baby’s Genes be Mandatory?” The article argues that as gene “editing” becomes safer and more reliable, modifying the genome of a fetus will eventually become commonplace, and parents who don’t utilize this option will be accused of endangering their child’s health. Continue reading Mandating designer babies?

Prenatal genetics in global context

Brocher workshop group photo

We’re thrilled to announce the publication of our article summarizing insights from our Brocher Foundation workshop! In December 2015, we held a workshop at the Brocher Foundation in Geneva, Switzerland, on “Non-Invasive Prenatal Testing in the Non-Western Context.” With the participation of experts from around the world, we spent four days learning about the diverse social, economic, political, and cultural contexts in which prenatal cfDNA screening is being introduced globally, and discussed approaches to promote equitable and socially appropriate implementation. Our new article, published in the Hastings Center Report, shares 8 key insights emerging from that workshop.

Continue reading Prenatal genetics in global context

Genetic counselors, genetic interpreters, and conflicting interests

by Katie Stoll, Amanda Mackison, Megan Allyse, and Marsha Michie

The booming genetic testing industry has created many new job opportunities for genetic counselors. Within commercial laboratories, genetic counselors work in sales and marketing, variant interpretation, as “medical science liaisons” to clinicians, and providing direct patient care. Although the communication skills and genetics expertise of the genetic counselor prepare them well for these roles, they also raise concerns about conflicts of interest (COI).

Continue reading Genetic counselors, genetic interpreters, and conflicting interests

Kiruna Stamell asks ‘why aren’t we genetically modifying people to be more like me?’

“The [UK] Royal Society of medicine is debating whether embryonic gene editing will improve the health of future generations. So is this the future of medicine? Or could it be the thin end of the wedge… the first step in the direction of designer babies.

Speaking against the motion is the actress Kiruna Stamell who has dwarfism. She thinks society should be working to make it easier for people to live with a disability and wonders why for global warming’s sake we aren’t gene editing people to be her size.” See the video.