3 Quick Thoughts: Your Cells. Their Research. Your Permission?
This was originally published on my Tumblr on Jan. 7, 2016
Today, in things that desperately need better clarification, I am catching up on holiday reading and was a bit shocked to see proposed changes to the Common Rule, which are long-overdue.
“The United States government recently proposed sweeping revisions to the Federal Policy for Protection of Human Subjects, or the Common Rule, which governs research on humans, tissues and genetic material. These changes will determine the content of consent forms for clinical trials, if and how your medical and genetic information can be used, how your privacy will be protected, and more. The most controversial change would require scientists to get consent for research on all biospecimens, even anonymous ones.”
However, there is one looming issue that always pricks me in the gut when I read about news like this, which is that most people don’t know the first thing about it.
And, like most regulatory policy shifts around that grey area we call “the life sciences,” the general interest news media is nowhere to be found. A quick Google search proves that besides this one OpEd in the New York Times and obligatory coverage in The Verge, the top results on this issue are all wonky sites for nerds! Where are the journalists who can explain this to the average local news watcher? Ostensibly, that’s who these “sweeping changes” affect most.
Alas, while the army of digital journalists chase their tails on Twitter and blather on about Donald Trump, another important piece of science legislation goes unnoticed.
Here are my top three quick thoughts:
“The proposed changes are open for public comment on a government website through Jan. 6, but so far most comments are coming from scientists, research institutions, bioethicists and industry groups who strongly oppose the new consent requirements.”
Today is January 7, which means the public comment period is over. Echoing the writer, it’s clear that the “public” — people who are not direct stakeholders — are widely ignorant of these policies.
How can we do better to let people know about them? Obviously, this is easier said than done, but… It is in the media’s best interest to try, no doubt.
“I’ve talked to other still-anonymous donors…they’re proud they helped science. They believe tissue research is important, but they wish they’d been asked permission from the start, to avoid difficulties that followed: the shock of learning they were part of research, debates over who controlled samples, questions over profits.”
At least someone is taking the time to discuss these issues with the people who have been affected by them. That said, it is also the responsibility of the scientists to interact with the public and dig through their concerns to be able to come to an understanding with lawmakers. Obviously, writers and journalists have the most responsibility for due diligence here, but other stakeholders can’t be let off the hook.
The “profits” issue is a glaring one as well, because “helping science” and “helping a big, private pharma company” are two very different things that donors may feel different about. But that’s a deeper issue for another time.
Originally published at itslexikon1.tumblr.com.
