A Reddit AMA with Dr Francis Collins
On Friday last week, Director of the National Institutes of Health (NIH), Francis Collins, MD, PhD, participated in an ‘Ask Me Anything’ session on the website Reddit. The session enabled researchers and scientists from across the globe to pick his brain for his views on a variety of topics linked to genomics, in the run-up to DNA Day this Thursday. We took a look at some of the most interesting conversations taking place and pulled them together for you!
Many of the highest voted questions related to the NIH’s All of Us Research Program, a project aimed at gathering the health and genomic data of one million people from across the United States. The NIH hopes that by collecting this dataset, they will be able to accelerate research and improve healthcare with a greater understanding of disease and possible treatments. In particular, participants were interested in knowing how the NIH could guarantee data security in an electronic environment that has seen several high-profile data breaches over the last few years (Facebook, Equifax, etc.).
Dr Collins acknowledged that there was always going to be a risk of data security breaches, saying “No system is foolproof.” Nonetheless, he stands by their protocols, stating that the Program uses state-of-the-art encryption tools that, under testing, haven’t revealed any major vulnerabilities. In the event of a breach, all of the data collected has been deidentified so that it cannot be traced back to any of the participants. Under this security, the All of Us Program has recruited 25,000 individuals to take part and will be launching nationally soon.
Staying with the data topic, one question asked how Dr Collins thought scientific funding could change over the next decade. In his reply, he reasoned that while it was difficult to predict how science would change over such a large time scale, he was sure that data science will need to see a far greater investment than it does at present.
“Biomedical research is now producing petabytes of data every day in a fashion that no one anticipated 20 years ago,” he wrote. “There is a pressing need for more computational biologists.”
The conversation also turned to one of the hottest topics in the industry at the moment: gene editing. In particular, one user (mikeosteenstra) wanted to know why the technology wasn’t currently available for treating patients and what we need to do to get us to the point where it is possible.
“I agree that the potential of gene editing to provide cures for those thousands of diseases where we know the DNA mutation is extremely exciting,” Dr Collins replied. “But let’s not underestimate the challenge of delivering the gene editing apparatus (such as CRISPR) to the right the cells at high enough efficiency to correct the defect without causing harm. We will get there first for conditions that affect cells that can be treated outside of the body (ex vivo). A likely example that many of us hope will see its first cures in the next five years is Sickle Cell Disease. NIH has recently announced a new program to speed up the therapeutic uses of gene editing and we will spend $190 million on that program over the next five years.”
Of all of the questions submitted, it was a three-part query from user PHealthy that received the most attention. It was the first of the three questions sparked the most conversation: “What are your thoughts on the various private genetic kits (23andMe, etc…) and the potential to abuse private genetic information for corporate gain?” The place and role of DTC genomic testing has been hotly debated within the genomics community over the last few years, particularly after 23andMe were granted FDA approval for a selected list of medical tests last year.
In response, Dr Collins wrote, “I can speak generally about such kits. I think that individuals who are interested in obtaining information about their DNA and are willing to pay for it ought to be able to do so. But it’s critical that they also get accurate interpretations of what it all means. Genetic information ought to be held privately unless the individual decides to disclose it.”
Not all of the questions took the form of broad, open queries about the state of science; some were of a more personal nature instead. For example, one user (bdresner) wanted to know how Dr Collins was able to reconcile his Christian faith with his scientific background.
“Science is the way to answer questions about the natural universe,” Dr Collins responded. “But science can’t really answer questions such as: Why are we here? What happens after we die? Or is there a God? I think those are interesting questions. I’ve never encountered a conflict between my scientific and spiritual world views as long as I keep clear about which kind of question is being asked.
“If God chose to use the mechanism of evolution to create the marvellous diversity of living things on this planet, who are we to say we wouldn’t have done it that way?”
Another post from user unintentional_irony asked how Dr Collins felt about the now-criticised term ‘junk DNA’ when referring to sections of the genome that do not code for proteins. Since the term was coined, research has demonstrated that these regions of the genome are vital to cell function.
“That was an unfortunate term, and I hope I was not one of the ones who used it . . . at least not very often,” Dr Collins wrote. “We are learning more every day about the 98 percent of the genome that does not code for protein but determines how genes turn on and off in specific tissues during development and after environmental exposures. That’s incredibly important information. It certainly is not junk.”
The topics mentioned here are just some of those that were discussed over the course of the session; the entirety of the AMA can be found on the subreddit /r/science. Of course, one user (cfcfever) asked the all-important question: what does Dr Collins think of the 1997 film GATTACA (a favourite of FLG’s Managing Editor Carl Smith)?
His response: “I saw it four times when it first came out. I even served as the movie critic for NBC in prime time. I thought the film was very provocative and helped to point out both the promise and the peril with advances in genomics if they are not connected to social and ethical concerns.”