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.

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.

Should prenatal testing be used to detect intersex conditions?

Celeste Orr writes in The Guardian that disorders of sex should not be a legitimate target of prenatal screening using PGD or genetic screening. Scientists in the UK have already introduced noninvasive genetic screening for congenital adrenal hyperplasia (CAH), one of the more common intersex disorders, on a research protocol.

Eliminating intersex babies is not a legitimate use of genetic embryo testing:It is done to reinforce the inadequate sex binary and even to police non-heterosexual, queer attractions or acts.

York University prof denied permanent residency over son’s Down syndrome

A Costa Rican family is leaving Toronto after three years in Canada because immigration officials say their son’s Down syndrome is too much of a burden on taxpayers. Even though they are leaving the country, they’re still fighting what they call medieval and barbaric legislation because they say it may help other families. Felipe Montoya and Alejandra Garcia-Prieto have been trying to get permanent residency in Canada since they first moved to Toronto three years ago with their two teenage children so Montoya could teach environmental studies at York University. Read More.

Or watch this NSFW response.

A New Direct to Consumer Test for Fetal Aneuploidy?

A couple weeks ago, the Daily Mail (which is the British print version of Fox News) announced a “Cheap, new test for Down’s that can be carried out at home: Instant results 90% accurate, say British makers”

The article seems to suggest, although it is not entirely clear, that this will be to Down syndrome testing what hCG detection was to pregnancy testing. At home! In private! No doctors involved!

What’s not entirely clear, however, is whether this is the best idea ever. Or, as Chris Kaposy puts it in Do we really need an even better test for Down syndrome?: “There is an inconsistency between the lived experience of people who have Down syndrome and the corporate arms race to develop new and better means for identifying fetuses with Down syndrome…In contrast to the scientist who devotes her life to the treatment of cancer, Dr. Iles’s devotion to create a test that helps parents to avoid the birth of people who tend to enjoy their lives seems somehow less ambitious, or off the mark.”

Word.

On a completely different front, it’s unknown what the regulatory agencies will think of the whole thing, since the only thing “stopping” them from regulating NIPT so far has been that it is a lab developed test and not a test kit. This seems to pretty clearly be a test kit. So have fun with that, FDA.