Tag Archives: Ethics

Google Knows What’s in Your Inbox, But It Shouldn’t Get Your Genome Without Consent

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Originally posted in the Timmerman Report

I once had an idea for a science fiction story where everyone was paranoid about their genetic information getting out because of a misguided belief that genes equal destiny and that the burden of privacy is all on the individual. People would wear protective suits and carefully guard against leaving any iota of tissue out in public—not a single follicle or skin flake. All to prevent anyone else—potential employers, rivals, even potential lovers—finding out information about their genes.

I planned the story as a satire, taking our current world where Precision Medicine and cheap genome sequencing and not-quite-as-cheap genome interpretation are real things, and extrapolating to an absurdity. I wanted to highlight the kinds of more realistic challenges we might face as we learn more about our genes and face increasing questions about privacy and access to health care services. Of course, I thought this was completely speculative; I’d just be building a straw man story to make a point. I knew something this extreme would never really happen.

But maybe I was wrong. Continue reading →

Some MLK Day thoughts about evolution, teachable moments, and being human

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Maybe my favorite episode of Northern Exposure is the one where Maurice Minnifield (played by the great Barry Corbin), the bigoted, pompous, ex-astronaut is surprised to discover he has a son, Duk Won, conceived during service time in Korea. After grudgingly admitting that Duk Won’s claim is real, Maurice has a conversation with Chris, the town’s DJ and amateur philosopher, about how difficult this is. Their conversation concludes something like this:

Maurice: I wouldn’t have had such a problem with this if only…

Chris: If only he were white?

Maurice: …Yeah…

Chris: Well, that’s a reason for hope.

Maurice: What? What are you talking about?

Chris: Because racism is a learned behavior. And that means it can be unlearned. Continue reading →

The potential for “Found Research” in fecal transplant treatments

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All opinions are my own and do not necessarily reflect those of Novo Nordisk.

A few days ago the New York Times ran a nice article discussing a recent test of whether fecal transplants can be done using a pill format delivery system. The research, reported (and free, no less!) in the Journal of the American Medical Association, was peformed by physicians at Massachusetts General Hospital who had formulated human feces in an encapsulated pill format to see if that would be effective as a kind of fecal transplant. Fecal transplants  appear to overcome infections by Clostridium difficile in patients. However, the conventional method for providing a fecal transplant is to deliver a liquid slurry either nasopharyngeally or via an enema-like procedure, neither of which is easily scalable. Also, yuck.

The current work, in which 14 of 20 patients responded to initial treatments using the poop pills, and an additional 4 responded the second time around, provided a proof of concept that a frozen, pill format delivery system may be a workable alternative to the current standard.

But as I was reading this article, I was struck by another thought. Are we missing a great opportunity for research into the interplay between the microbiome and human physiology?

Continue reading →

What would you want to do with genome sequence data?

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All opinions are my own and do not necessarily reflect those of Novo Nordisk

In the same issue of Nature that reported the HeLa sequence and the NIH agreement, Martin Bobrow of the University of Cambridge wrote a column discussing how we as a society choose to balance individual privacy and public good that arises from making data gathered from private samples public.

We are entering a strikingly different period of biological and biomedical research, as a number of different areas of research and technology are reaching a critical point of cross-fertilization.  Moore’s law has resulted in computers of amazing power that can analyze really stupendous amounts of data.  I was at the Seattle Museum of History and Industry recently, and in one of their displays they showed a 1980 IBM PC, and while showing it to my son, I pulled out my smartphone and told him that my phone today is just as powerful as that computer was.  Of course, I was wrong.  My phone is actually about 2.5 orders of magnitude more powerful than that PC. Continue reading →