Business Ethics & Genomics: Interview

I was recently interviewed for the newsletter of Genome Atlantic, about my work at the intersection of Business Ethics & biotechnology / genomics. (I sit on a Genome Atlantic advisory body known as the "GE3LS Forum". "GE3LS" stands for "Genomics-related, Ethical, Environmental, Economic, Legal, and Social Implications.")

Here's the interview.

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GA: How would you define 'business ethics'?

CM: Business ethics is many things to many people. For some, it's a set of behaviours. For others, it's a set of rules. For others, like me, it's a field of study, though hopefully one with practical applications. As a field of study, business ethics can be defined as "the structured, critical examination of questions of right and wrong in the world of commerce." It's about looking in a critical way at the choices businesses make, and helping them find the best, most defensible, ways of doing what they do.

GA: You have a special interest in biotech ethics - what's the appeal for you?

CM: I think the biotech industry is just obviously the most exciting industry on the planet today. People in bioethics have been interested in it and writing about it for years. But I think that now that biotech is increasingly moving from the lab into the marketplace, the business ethics issues are going to start coming to the fore.

GA: What kinds of ethical issues do you find in genomics?

CM: There are so many it would be impossible to name them all. But the ones that currently interest me the most are ones where genomic technologies touch individual consumers. So, questions about the usefulness of non-clinical uses of genetic testing, and the appropriateness of selling such tests direct-to-consumer. Or questions about the labelling of genetically-modified foods: I don't think GM foods themselves ought to be terribly controversial, but there are interesting questions that arise when the public wants information about their food, and companies refuse to provide it.

GA: GE3LS covers so many areas - is it realistic to think that we can really address all of the issues related to genomics research?

CM: I think there will always be gaps, things we haven't thought about until they sneak up and bite us. But I think generally, yes, we can hope to address all the key issues, as long as the "we" here is sufficiently broad. It's not just for university professors like me to think about this stuff. We need an educated public, just as much as we need attention paid to ethical issues by companies, industry associations, and funding agencies.

GA: Personalized genomics seems to be of high interest to you - what issues do you think people really need to be aware of?

CM: I think the first issue is whether the kinds of tests offered by personal genomics companies are truly useful or not. There's plenty of doubt about whether those kinds of tests can be helpful, or whether they're more likely to be misleading. But from a business ethics point of view, there's nothing automatically unethical about selling a product that's only marginally useful, as long as people know what they're getting. So that's the other key issue: do consumers understand how useful (or not) personal genomics services are at this point. And given our best guess about that, what's the best way for responsible companies to conduct their businesses.

GA: What about other, non-human genomics?

CM: I think the non-human stuff (including agricultural genomics and industrial genomics) is incredibly important, likely increasingly so. Human genomics stuff gets a lot of attention, because it's easier to relate to. But it seems to me that the ethical issues that arise from both the risks and the benefits of, for example, industrial uses of genetically modified microbes are ones we should be paying more attention to.

GA: Do you think the general public should become more aware of ethical issues in genomics, or should we feel secure knowing that people like you are making this an essential part of your work?

CM: Absolutely, the public needs to be more aware. If, as they say 'war is too important to leave to the generals,' ethical issues in genomics are far too important to leave to the philosophers. I do what I can to help companies and the general public frame the relevant questions clearly, but answering them is definitely not something I want to do on my own.

Disabilities & Genetic Testing

By bioethicist Arthur Caplan, writing for MSNBC: Disability-free world may not be a better place

...Gene testing of parental carriers is leading to the birth of fewer and fewer children with inherited diseases in the United States. Other conditions such as Down syndrome, which uses prenatal testing of the fetus, are also apparently being screened out in greater numbers....
...Reducing the burden of disease is obviously a good thing. But genetic testing of parents, and, as is now happening with increasing frequency, embryos, raises some difficult ethical challenges as well....

There's an interesting conflict between headline and content, here. In fairness to Caplan, it's highly unlikely that he got to choose the headline. Still, it's interesting to point out that the claim suggested by the headline appears nowhere in Caplan's article. As far as I can see, Caplan doesn't contemplate what a disability-free world would be like, let alone reaching a conclusion about such a world. I'm pretty sure there are people who argue that the world with disabilities is better than a world without them — perhaps because they think that the rest of us learn something valuable about diversity and tolerance from exposure to persons with disabilities, and this outweighs the difficulties faced by persons with disabilities themselves. But Caplan himself doesn't make that argument.

The question Caplan tackles is actually quite a different one: what will life be like for people with disabilities in a world in which the number of such persons is reduced, but not reduced to zero?

Genetic Tests for Determining Fetal Sex

It's safe. It's accurate. It predicts the sex of a fetus, at just a few weeks' pregnancy.

And it's not being sold direct-to-consumers for at-home use.

Yet.

From the LA Times: A new test to reveal a baby's gender revives an old ethical dilemma

Now a team of Dutch researchers reports a new method for screening maternal blood and reports 100% success in determining a baby’s gender as soon as seven weeks after conception.

The study included 201 pregnant women whose blood was drawn between 2003 and 2009. The test produced conclusive results in 189 cases, and all of those results were correct. The findings were published in the January issue of the journal Obstetrics & Gynecology.

The idea behind the test isn’t simply to give parents extra time to start painting the nursery pink or blue. It’s to help screen for genetic disorders that are sex-linked.

Or, it could be the basis for sex selection by means of abortion — which makes this a technology bound to raise ethical concerns. And if, like so many other genetic tests, it is eventually offered at home, far from doctors and their talk of what's "clinically necessary," the debate will only get louder.

Gene Doping & the Olympics

Cutting-edge medicine is perhaps most likely to be sought out by those with desperate need. Desperately ill people might be the first group of such people to come to mind. But what about people who are desperately driven to win in sports?

From Andrew Moseman on Discover's "80 Beats" blog: Geneticists Are On the Lookout for the First Gene-Doping Athletes

We’re only a week away from the 2010 Winter Olympics opening in Vancouver, and the return of the games brings with it the return of crazy stories about how far world-class athletes will go to get even the tiniest edge, legal or illegal. In the journal Science this week, researchers led by geneticist Theodore Friedmann take the opportunity to warn about gene doping, the next looming crisis in cheating at high-stakes athletics....

This story brings up a range of ethical issues (not all of them unique to genetic technologies), including:

• use of experimental technologies on desperate patients;
  
• good sportsmanship;
  
• the perverse dynamics of an arms race, and what we can reasonably expect, ethically, from people involved in one;
  
• the lure of all things "genetic" — apparently it's nearly cat-nip for people seeking powerful effects;
  
• the distinction between treatment and enhancement. That distinction that is surprisingly hard to define clearly, but it's important to think about, since it divides 2 goals about which people tend to have very different ethical intuitions.
  

Mistrusting GM Foods: Is It the Product, or the Pusher?

From Australian Food News: Australians “uncomfortable” with GM food

The headline might be a bit misleading. Because a big part of what the story actually says is not that Australians are uncomfortable with GM food per se, but that they're uncomfortable with the institutions promoting GM foods:

Australians remain uneasy about eating genetically modified (GM) foods, according to research from Swinburne University.
The University’s fifth National Science and Technology Monitor found most people well informed about GM but still very mistrustful of the institutions that commercialise GM foods.
“A major target of public mistrust is Monsanto, the world’s biggest seed company that owns patents on over 90% of all commercial GM soy, corn, canola and cotton crops that are grown,” Gene Ethics director Bob Phelps asserted.

Frankly, I'm sympathetic to that worry. And though I have practically no worries about GM foods, and few (but not no) worries about GM crops, I've got much more significant worries about the current patterns of commercialization, and about Monsanto's increasing control over the seed industry.