Safe Containers: Reframing Nondirectiveness in Genetic Counseling

by Jon Weil and Robert Resta Jon Weil was Director of the Program in Genetic Counseling, University of California Berkeley, from 1989 to 2001 and is the author of Psychosocial Genetic Counseling, Oxford University Press, 2000. He retired in 2001 but has remained professionally active. His current interests include the continuing development of psychosocial genetic counseling and promoting locally focused, patient-oriented international genetic counseling…

thednaexchange.com

A Framework for Conceptualizing Utility and Actionability in Genomic Screening and Diagnostic Testing

Actionability and utility in the context of genetic testing are related but poorly defined concepts. In this blogpost I propose a model for viewing the relationship between the two concepts, along with examples of actions that have the potential to improve utility.

thednaexchange.com

My Generation Is More Ethical Than Your Generation

It is easy to criticize the sins and moral shortcomings of our forebears in medical genetics and genetic counseling. But everyone is a product of their times and it is important to interpret the past and understand the present in this context. Every generation judges its predecessors.

thednaexchange.com

Guest Post: They Canceled Our Anti-Eugenics Talk. The Censorship Proved Our Point.

by Ambreen Khan, Kim Zayhowski, Robert Resta, and Laura Hercher This piece is our team’s account of censorship and threats from members of the genetic counseling community. It is both testimony and a demand that our profession do better. We were twice scheduled to present a webinar on the threat of modern eugenics – only for both events to be canceled after anonymous complaints and undisclosed claims about threats and safety.

thednaexchange.com

Justifying Preimplantation Polygenic Embryo Screening: The Autonomy Chickens Come Home To Roost

Autonomy has been a core guiding ethical principle of genetic counselors pretty much since the profession's founding in the early 1970s. There are various definitions of autonomy but on a work-a-day basis in genetic counseling, it is usually conceptualized as the right of patients to make decisions about genetic testing that are educated and without undue external influence or pressure. It relies heavily on information-based consent.

thednaexchange.com

onlinelibrary.wiley.com

My DNA Contains Multitudes. So Does Yours.

The genetic variation within our bodies is often neglected in discussions of DNA. But each of us contains a fantastical number of genomes that keep shape-shifting throughout our lives. We should celebrate our intra-person genetic variability. Call it IPGV, since using an acronym seems to give scientific street cred to a concept or phenomenon.

thednaexchange.com

Why SRY? World Athletics Decides Who Is Female

World Athletics recently released new criteria for determining who can compete as a female in World Athletics sanctioned events. The criteria are straightforward - to compete as a female you must test negative for the SRY gene. This post critiques that criterion in light of the complexity of the development of primary and secondary sexual traits.

thednaexchange.com

Using Genes to Sell Eujeanics?

The controversy-du-jour in the mediaverse this past week centers on an advertising campaign for a pair of jeans by an apparel company, starring uber-celebrity Sydney Sweeney, that has raised the eugenics specter. It also capitalizes on the faded pun of jeans/genes, which gave me literary leeway to use the weak pun in the title of this posting. The controversy will likely be so short-lived that by the time this posting is up, the world will have its knickers in a twist over something else.

thednaexchange.com

Eugenics and American Fertility: Now and Then

The trump administration seems to think America has a birth rate that is too low. Basically, the idea is that in this country you just can't have enough babies born to White middle and upper middle income married couples. Proposed pronatalist measures for increasing the birth rate, many of which are likely to be championed by the trump administration, stand out for their foolishness, ineptitude, and…

thednaexchange.com

The Genetic Basis For Guidance of The Better America Breeding Initiative to Enhance Society (BABIES): A (Very) White Paper

Authors: Contract employees of the newly-created NIH Division of Genomic Efficiency (NIH-DOGE), the cost-effective replacement NIH Institute for the now defunct National Human Genome Research Institute (NHGRI). The mission of NIH-DOGE is to improve America's genetic health. NOTE: This is a satire. I added this disclaimer after I wrote the first draft of this post because, well, it sounded like it could be true.

thednaexchange.com

Potential Implications of The Trump Administration Policies For Genetic Counseling – Part 2: The Impact On Patients

Last week in Part 1 I looked at the potential impact of Trump's policies on genetic counselors. Here I speculate about their impact on patients. As in my last posting, my analysis is not complete and, so far, mostly speculative because the effects of the policies are only beginning to be felt and Trump flip-flops so frequently that it's hard to know how permanent they will be.

thednaexchange.com

Potential Implications of The Trump Administration Policies For Genetic Counseling – Part 1: The Impact on Genetic Counselors

This is a two part blogpost. Part 1 focuses on the impact of Trump's policies on genetic counselors. Part 2, which I plan to post next week, will focus on the impact on patients. When everyone is up front and they're not playing tricksWhen you don't have no freeloaders out to get their kicksWhen it's nobody's business the way that you want to live…

thednaexchange.com

What Can Genetic Counselors Do About The Rot, Corruption, and Hate At The Core of the Trump Administration?

Let me start by saying that I am not sure yet about what genetic counselors should be doing to fight the racist, vile, despicable, UnChristian/unMuslim/unJewish/unEvery Other Religion-In-The-World policies, actions, and statements of the Trump administration. I do know that we should not be cowering quietly in the corner, overwhelmed by the crap coming out of the bowels of (F)Elon Musk and PINO Trump (President In Name Only) in peristaltic waves.

thednaexchange.com

Black History Month: Journal of Genetic Counseling

Click on the title to browse this issue

onlinelibrary.wiley.com

Will The Updated NSGC Pedigree Nomenclature Guidelines Sink The Effort To Obtain Medicare Coverage For Genetic Counselors?

Back on January 20th, American democracy and decency began to swalllow a poison pill of its own electoral making. The fallout has been all kinds of horrible, nationally and internationally, except in Moscow where Putin is having a belly laugh because America is doing his dirty work by destroying itself. The US Constitution is being shredded. People who are transgender, gay, non-White, and all the other non-majority varieties of American demographics feel that their very lives are threatened.

thednaexchange.com

Decisions, Decision, Decisions

Should I stay or should I go now?If I go there will be troubleAnd if I stay it will be double- From The Clash’s “Should I Stay or Should I Go?” Working with patients as they make …

thednaexchange.com

Decisions, Decision, Decisions

Should I stay or should I go now?If I go there will be troubleAnd if I stay it will be double- From The Clash's "Should I Stay or Should I Go?" Working with patients as they make decisions is one of the core components of genetic counseling. It's not the only thing genetic counselors do, but we sure do it a lot.

thednaexchange.com