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.

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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.

NAS Publishes New Report on Gene Editing in Humans

“An influential science advisory group formed by the National Academy of Sciences and the National Academy of Medicine on Tuesday lent its support to a once-unthinkable proposition: clinical efforts to engineer humans with inheritable genetic traits.

In a report laden with caveats and notes of caution, the group endorsed the alteration of human eggs, sperm and embryos — but only to prevent babies from being born with genes known to cause serious diseases and disability, only when no “reasonable alternative” exists, and only when a plan is in place to track the effects of the procedure through multiple generations.” Read More.

Are We Ready For This?

Genetic counselor Robert Resta offers a critique of prenatal screening’s “mission creep” and lays out the things that should be in place–but aren’t–in order to support informed choices about prenatal screening.

The DNA Exchange

Recent advances in genetic testing technology have us poised on the brink of a new paradigm of prenatal diagnosis – prenatal screening for all genetic and chromosomal conditions. Okay, not all disorders, but lots. Non-invasive Prenatal Testing (NIPT), whole exome sequencing, and expanded carrier screening are close to being available and affordable to a large proportion of the population. This is the culmination of a trend that began with the introduction of amniocentesis in the late 1960s, followed by ultrasonography, maternal serum screening, microarrays, and cell free placental DNA in maternal serum. From a strictly technical standpoint, each technology, while far from perfect, was an improvement on its predecessors in terms of accuracy, detection, false positive rates, and the range of  detectable genetic conditions.

On the surface, this sounds like progress, and it is, in many ways. These technologies can contribute to the reduction of the incidence genetic conditions, some of which…

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PIRC Members Publish New Article on Conflict of Interest in Genetic Counseling

PIRC members Megan Allyse, Katie Stoll, and Marsha Michie co-authored a new article in Genetics in Medicine on conflicts of interest in genetic counselors who work for commercial laboratories that sell prenatal genetic tests.

“As an employee of the company, a genetic counselor has two interests: following practice guidelines and benefitting their employer. These two interests are not always in conflict, but the potential exists. And while commercial laboratories may highlight genetic counseling by a laboratory-provided genetic counselor as a value-added service benefitting patients, it may not always be obvious to patients that they are receiving genetic counseling from an employee of a genetic testing company.”

The article can be accessed here.