Gene editing probably won’t make the next Spiderman, but it’s possible that the world’s first gene-edited babies have been born. He Jiankui, a Chinese scientist, shocked the world and its ethical sensibilities by revealing last week that he used CRISPR to lower two twin girls’ risk of HIV infection. And a third baby is on the way. Less HIV is certainly something we can all get behind, especially when World AIDS Day was last week. But CRISPR is still brand-spanking new, and scientists are questioning the medical appropriateness of this use of gene editing when the consequences aren’t super well understood and possibly catastrophic. Even a CRISPR co-founder is calling for a moratorium on live-embryo testing. Is this a breakthrough like the first IVF birth, or a slippery slope? From Nature: six questions that remain.
Do you consider not disclosing corporate ties in academic research to be a serious ethical problem?
The well-known oncology researcher José Baselga has resigned his position as Chief Medical Officer at Memorial Sloan Kettering after an NYT/ProPublica investigation showed he failed to disclose millions in payments from pharma and healthcare companies in dozens of his research articles. The payments themselves aren’t at issue, it’s the fact that he didn’t make his ties explicitly known. Which is kinda funny since those financial reporting rules were set by the American Association for Cancer Research while he was president of the group. Critics say Baselga’s fall illustrates the bigger problem of the revolving door between academic research and industry, as well as a general laziness towards enforcing ethical standards from the academic community. Expect a rush of researchers who ‘forgot’ to include their financial ties in previous papers to quietly go add those in.
Not being concerned with pesky ethics concerns, China is pulling ahead in applying genetic editing technology towards therapeutic uses. Not content with being the first to edit monkeys, non-viable embryos, or sticking the first edited cells into a live human, a recent study showed Chinese researchers were able to fix a disease-causing mutation in viable embryos. They used base editing, which is slightly different from Crispr editing (easy-to-digest visual here), to replace the gene which causes Marfan Syndrome. The disease is typically incurable, so there’s obviously some appeal for pushing science’s boundaries for such positive results. Attitudes towards embryo editing may be changing in western nations, but don’t expect base editing to be used therapeutically for some time still.
The first case concerning the recent Right to Try legislation has come along and it involves Matt Bellina, one of the patients who pushed to pass the legislation in the first place. Before diving in this writer just wants to say—damn this guy is really a fighter. He’s not only a veteran battling ALS, but he also got legislation passed in freaking Congress, which isn’t easy. His case involves a cell therapy being developed by BrainStorm Cell Therapeutics, a biotech with no currently marketable treatments. It’s planning on addressing Right to Try applicants in a semicommercial model that they say won’t exploit patients. But since the company is pre-revenue there’s some big ethics concerns about how to charge vulnerable patients for the expensive treatments, which the law may not address.
Now we’re not going to begrudge anyone at the end of their rope looking for anything that can help, but we do have some strong opinions on the subject. Listen to our recent discussion on Right to Try here in our second InsightCity podcast.
The Moderate Alcohol and Cardiovascular Health Trial (MACH15) was designed to observe the effects of moderate drinking versus being a nerd responsibly abstaining. But the National Institutes of Health has shut down the study after compromising contacts between scientists and alcohol industry executives were exposed by The New York Times. The NIH conducted its own internal investigation of the claims that scientists had courted these executives to fund the study through a nonprofit—which itself is a violation of government policy. The investigation found staffers “hid facts” from team members, apparently to frame the study in a pro-alcohol light. Talk about beer goggles. Score one for ethics in research at least.
Big topic for a short article but here’s the skinny… you receive a scan for some legitimate reason in the course of receiving health care. Scientists and companies use your images—stripped of all personally identifying information—in the development of artificial intelligence that is able to diagnose disease. These people and companies make gobs and gobs of money. Are you owed compensation because their commercial product could not have been developed without using “your” scans? This is somewhat different—it could be argued—than the famous case of Henrietta Lacks, whose live cells were used and commercialized. (By the way, she also got no money.) These are just scans. Ones and zeros, right? Here is a more complete report from NPR, with modern-day cases. Let InsightCity know what you think in this week’s FastPoll™.