Biotech Ethics

From CTV News: Some Canadians suffering ‘genetic discrimination’

With medical advances, Canadians can now learn whether they carry the genetic risk for devastating diseases. But that knowledge could come at a price, suggests a study that looked at the growth of “genetic discrimination.”

The study from researchers at the University of British Columbia looked at Canadians at risk of developing Huntington’s disease, a degenerative brain disorder for which there is no cure or treatment to slow it.
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They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test….

Interesting study…though it’s worth pointing out that the study does not really provide evidence that genetic discrimination goes on. First, the study was based on self-reported discrimination, rather than documented discrimination. Also, the word “discrimination” is loaded. The word can just mean “differentiating between kinds or cases”, but in common usage it means to treat different cases differently in an unfair way. And you simply can’t rely on self-reporting when it comes to identifying unfair treatment: just because I feel that I’ve been treated unfairly doesn’t mean that I have been. That’s not to say that the results of this study aren’t interesting and useful; it’s just to point out the limits and assumptions of this sort of research.

What happens when 2 of the world’s hottest technologies — social networking and personal genomics — come together?

Dig this press release, via Marketwire: PatientsLikeMe Teams Up With 23andMe to Help Parkinson’s Patients Health 2.0 Pioneers Work Together to Accelerate Research

PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today to help people with Parkinson’s disease. PatientsLikeMe is teaming with 23andMe on its effort to recruit 10,000 people with Parkinson’s for a massive study of the disease, and give patients a way to learn more about their personal genetics….

PatientsLikeMe is a social networking site, but it’s also one that physicians and researchers can get access to, to gather information. Now add to that 23andMe’s ability to generate genomic data, the significance of which (and the significance of the sharing of which) will often be poorly understood by customers/members. The combination raises at least the worry that people will let their guards down — PatientsLikeMe is a community, after all — and make poor decisions, either about participating in research or about sharing potentially-sensitive genetic information.

Here are the Wikipedia pages for PatientsLikeMe and 23andMe.

From Foreign Policy: The Next Big Thing: A New You, by Juan Enriquez.

As countries and industries grow increasingly overwhelmed by wave after wave of bankruptcies, layoffs, restructurings, botched contracts, and embarrassing bonuses, they might lose sight of a second, much larger set of tsunamis gathering force over the horizon. While the economy is melting down, technology is moving forward at an even faster rate. The ability to adapt to the accelerating pace of change will determine who survives.

To use the current bailout jargon, at least three major technologies are shovel-ready: the programming of tissues, the ability to engineer cells, and robots. As these breakthroughs and others converge, we are going to see a massive restructuring of global economic power….

How is this playing out, internationally?

Over the past few decades, the ability to code digits created an unprecedented burst of wealth, a large-scale restructuring of industries, and the rapid rise of once poor countries (Ireland, Singapore, South Korea, Taiwan, and some regions of India come to mind). Something similar is occurring in life-literate countries. What began in the mid-1990s as an obscure subspecialty related to pharmaceuticals has become a key component of national development plans….

Clearly, Enriquez is not a man who’s shy about making grand predictions. And absent from his analysis is any hint that there might be risks — let alone that the risks related to any particular technology could conceivably outweigh the benefits. As readers of this blog may have noticed, I’m generally optimistic about the future of biotechnology. But that’s not the same as believing in it uncritically. But yes, exciting times, to be sure.

Not all biotech ethics stories are about biotech.

From the Denver Post: Biotech ad draws fire from Colorado lawmaker

A newspaper advertisement that commends Democratic Gov. Bill Ritter for pushing biotech industries rankled a Republican lawmaker who says he thinks the piece should have been labeled a campaign ad.

“This is just a big, wet kiss for Bill Ritter,” said Sen. Shawn Mitchell of Broomfield.

He asked an ethics group to investigate whether the ad violated campaign finance laws.The group’s director later said no violation occurred….

This is a good example of why it’s a bad idea for biotech companies and industry associations to think only about bioethics.

(Another note: the story quotes Ken Johnson of PhRMA as saying that he’s promoting biotech because we’re not going to cure cancer with “$4 generic drugs.” We’re certainly not going to do so with the generic drugs currently available…but not at all clear that cheap generics won’t ever play an important role. Plus it seems politically unwise, shall we say, to be mocking affordable healthcare products.)

From BusinessWire: Risks of Sharing Personal Genetic Information Online Need More Study, Stanford Bioethicists Say

With just $399 and a bit of saliva in a cup, consumers can learn about their genetic risk for diseases from breast cancer to diabetes. Now, thanks to social networking sites set up by personal genomics companies, they can also share that information with family, friends and even strangers on the Internet.

Bonding over a similar genetic background sounds relatively harmless. But according to bioethicists from the Stanford University School of Medicine, sharing genetic information online raises a host of ethical questions.

“Genetic information is unique in that it’s not only relevant for the individuals who receive the information, but also for their family members, their children and even their children’s children,” said Sandra Soo-Jin Lee, PhD, senior research scholar at the school’s Center for Biomedical Ethics.

Because genetic information applies to more than one person, issues of privacy and consent become complicated….

…recommendations will be published in a special double-issue of the American Journal of Bioethics on June 5….

Here’s the link to the American Journal of Bioethics. (That issue of AJOB includes a paper called “Research 2.0: Social Networking and Direct-To-Consumer (DTC) Genomics” by Soo-Jin Lee and her co-author LaVera Crawley, along with a bunch of commentaries on it, one of which I co-authored myself. In our commentary, Nancy Walton and I point out among other things that Lee & Crawly propose to investigate the democratization/empowerment promised by personal genomics, without recognizing that democratization and consumer empowerment are in fact very different ideas. If we’re going to understand the impact of personal genomics, we need to start by not conflating key concepts.)

Ronald Bailey, writing for Reason Online: You Can’t Handle the Truth: Do genetic tests need more federal regulation?

Worth reading in its entirety, but here are some key bits:

But does such direct-to-consumer (DTC) genotyping need to be regulated—or banned? Last month, Germany banned direct-to-consumer genetic testing. In 2007, the Genetics and Public Policy Institute found that 24 states limited or restricted direct-to-consumer genetic testing in some ways. Last year, both New York and California heightened their regulatory scrutiny of genotype scans such as those done by 23andMe, deCode, and Navigenics. The good news is the genotype scanning companies obtained licenses from California authorities, and so can now still offer their services to California residents. Several companies are still navigating through New York State’s regulatory maze. Last year, the American Medical Association adopted recommendations opposing direct-to-consumer genetic testing, stating that a health care professional should be involved with any genetic testing.
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There may well be some inaccurate tests and there will certainly be people who mislead customers about the meaning of certain tests. But do we really need additional federal regulation to weed out bad actors? Most evidence suggests that the current tests are fairly accurate, and that customers are not being misled by the results that are reported. All new technologies involve a societal learning process in which some early adopters try it out, explain to others how it works, and find out its flaws—which newer innovators then fix.

In fact, the way the genetic testing industry will evolve is that the companies that tease out and explain useful information about disease risks and pharmaceutical interactions will be the ones to succeed. The bigger risk is that increased federal regulation will slow down beneficial genetic testing innovations….

One note: Bailey focuses on accuracy, but accuracy isn’t the whole issue. The other key issue is whether the tests actually tell consumers anything useful. Selling something just for its entertainment value is not ethically problematic — as long as consumers know what they’re getting.

(I’ve blogged about the ethics of marketing personal genomics, something that might be thought of as a not-very-useful product.)

From Genomeweb Daily News: European Genetics Group Offers Draft of Genetic Testing Oversight

The European Society of Human Genetics has issued a draft version of proposed recommendations for regulating and managing genetic testing and will be accepting public comments about its proposals until the beginning of July.

While some of the expectations raised by the arrival of the genomics era have yet to be realized, new studies about genes and their interaction with the environment offer promise for medicine, ESHG said.

The proposals were developed over three meetings over the past two years by ESHG’s Public and Professional Policy Committee, by the EU-funded Network of Excellence Eurogentest, and by the Institute for Prospective Technological Studies.

Currently in Europe the regulatory framework does not cover an independent evaluation for genetic tests before they are marketed, and the general public has access to genetic susceptibility tests that are offered on the internet, according to ESHG. The society also is responding to varying definitions for genetic susceptibility testing and screening, and to new discoveries of genetic variants….

Here’s the website for the European Society of Human Genetics.

From Grainews: Ag groups push back against biotech wheat

A bid by a number of Canadian, U.S. and Australian growers’ groups to help clear the regulatory road for gene-altered wheats has run up against equally opposed groups from the same three countries.

“In light of our existing experience with genetic engineering, and recognizing the global consumer rejection of genetically engineered (GE) wheat, we restate our definitive opposition to GE wheat and our commitment to stopping the commercialization of GE traits in our wheat crops,” 15 farmer, consumer and “civil society” groups said in a joint release Monday.

Canadian groups putting their names to the statement include the National Farmers Union (NFU), Canadian Biotechnology Action Network, Union Paysanne, Union Biologique Paysanne, Reseau Quebecois contre les OGM and the Saskatchewan Organic Directorate….

And in the other corner:

Canadian groups on board to support wheat biotech approvals included the Grain Growers of Canada, Western Canadian Wheat Growers Association and Alberta Winter Wheat Producers Commission.

U.S. supporters included the National Association of Wheat Growers, U.S. Wheat Associates and North American Millers’ Association, while Australian groups involved included the Grains Council of Australia, Grain Growers Association and the Pastoralists and Graziers Association of Western Australia….

For more information about the anti-GM-wheat effort, see also, from the Canadian Biotechnology Action Network: Stop GM Wheat – Join the Global Action.

Is biotech the best thing, or the worst thing, that’s ever happened to the environment?

Check out this article from the Times, which points to biotech as a source of environmentally-friendly products: Industrial biotechnology sales soar

The demand for plant-based chemicals, which are used in everything from skin cream to car tyres, is growing so fast that the industry could generate sales of as much as £12 billion in the UK and £360 billion globally by 2025, according to research.

Industrial biotechnology — manipulating the cells of plants and other biological resources to create chemicals — is increasingly used to make ingredients that have traditionally been generated using oil and other fossil fuels.

Goodyear is working on a bio-based alternative to isoprene, a chemical compound derived from petrol that it uses in the production of synthetic rubber for its tyres.

Boots teamed up with the Centre for Novel Agricultural Products at the University of York last year and created a hand cream that incorporates fatty acids from hemp plant oil….

Many opponents of biotech object on environmental grounds. Those objections come in 2 main flavours: a consequence-based objection that suggests that something bad (e.g., ecological disaster) will result from the use of GM crops, and a principle-based objection that suggests that it’s “just not right” to fiddle with nature, to ‘play God’, etc., independent of the consequences of doing so.

Those environmental objections are normally pitted against other kinds of values — things like economic development, the convenience of pesticide-resistant plants for farmers, etc. But the article above suggests significant environmental benefits from biotech. Advocates of GM foods also point to the idea that at least some GM food crops may bring environmental benefits. For example, crops engineered to be pest-resistant should reduce usage of chemical pesticides, and crops engineered to be drought-tolerant stand to reduce water usage. Those whose objections to biotech are rooted in the potential negative consequences will have to consider whether the pros outweigh the cons. Those whose objections are rooted in non-consequentialist principles will need to consider whether, and how, those principles are to be balanced against consequences both good & bad.

From Oliver Moore, writing for the Globe & Mail:
Meet – and eat – the modified Atlantic salmon

It looks like a normal Atlantic salmon, and the fish’s creators say it tastes like one, too.

But this is no ordinary fish that Aqua Bounty Technologies has produced.

Tweaked with genetic material from chinook salmon and an eel-like creature called an ocean pout, it reaches market size twice as fast as normal Atlantic salmon, the company says. Aqua Bounty has spent more than a decade chasing U.S. regulatory approval, which Food and Drug Administration officials have reportedly said is coming “soon….”

It would be a watershed moment – there are currently no genetically engineered animals approved for sale as food anywhere in the world – and opponents are predicting a wave of consumer outrage.

Approval in the U.S. would also mean GM salmon in Canada (where I live) very soon. Whether or not Health Canada specifically approves the fish for human consumption, Moore’s article points out that, under international trade laws, the Canadian government may have to accept the product — unless it can prove there’s a health risk, which is very unlikely.

And neither Canada nor the U.S. currently requires labelling of GM foods. No word on whether Aqua Bounty will voluntarily label the fish as GM. (I’ve argued before that they’re not obligated to.) At one point, a couple of years ago, the company’s website indicated that it was in favour of labelling — but that page has now disappeared.