Bioethicists to the rescue

The University of Toronto's Joint Centre for Bioethics seems to come up with an interesting topic for discussion every Wednesday afternoon at its weekly bioethics seminar.

Last week, for instance, one of its past students returned with a message that there’s a key role for bioethicists in the development of politically touchy race-based drugs.

Too often, the bioethicist turned lawyer said, such research is thwarted by fears of drawing a connection between genetics and race. That’s a tragedy, he says, because such medications could save lives in Canada’s native communities and the developing world.

But by setting an ethical framework for the work, bioethicists can defuse the issues before they make headlines. “We have a huge role to play, we can set the ground rules,” Shawn Richard told said in a question and answer period after last week's session. 

As with many of the JCB lectures, the discussion among the academics, working ethicists and researchers afterward provides some of the best insights into the state of debate today.

All the JCB lectures are webcast, and then archived on the centre's site. This week, the Wednesday seminar, starting at 4:10 pm, will feature Shawn Winsor, a clinical ethicist at Trillium Health Centre, talking about multiple embryo transfer.

But back to Richard's seminar.

He said that while many in the scientific community extol the possibilities of using genetic markers to tailor medications to each patient — helping with dosage levels and improving their effectiveness —  the field remains politically charged.

Government and corporate officials are wary of getting involved with anything that ties genes and race, Richard said. Many in the ethics community, Richard included, avoid the use of the word “race” at all, preferring such terms as “ancestral origins.”

As well, Richard fears that drug companies will focus on medications that will help rich white populations in the West, ignoring the needs of developing countries. “There’s some concern in developing countries that they are going to be left out,” he said.

Richard, who has a master’s degree in bioethics and is now articling at a Bay Street law firm, said there are limits to what the law can do in pushing companies to research such drugs. “The law tends to wait until a problem has developed,” he said.

But by debating the ethical framework in which such research can take place, bioethicists can help find ways for the work can be done without raising thorny or touchy issues, Richard said.

Once that’s done, he said, governments can be lobbied to provide tax incentives to drug companies to engage in the research, and private organizations such as the Bill and Melinda Gates Foundation can be encouraged to also provide more money.

Beyond developing countries, Richard said, the incentives could encourage companies to research medications developed specifically for Canada’s native population.

Comments

[deana]

Hoisting out the iceberg then, is this to say there is little interest in making drugs against AIDS because Africans can get AIDS? And Canadian Indians because they could be stereotyped as people who can get diabetes? I don't think so!

This Bioethics Centre is into climate change and I don't mean to make life politically correct for the Inuit.

The biggest stereotyping campaign going on in the medical climate today is the one being committed against white people and organ donation. This is the reason for digging up stereotypes here. This topic as presented is not all about the same old, same old. This Bioethics Centre and its clever lawyer hybrid guy have brought up the topic through the tool of race cliché, in order to conceal the biggest and most deadly stereotyping that has ever gone on in medical circles. Organs and death by harvesting are big business... financially, politically and socially. And it's a white people thing.

I came across a new term the other day. It's a beauty: "YESP."

A YESP is a person who says YES to organ donation because they believe the gesture showcases them as sophisticated, refined, merciful, progressive, taboo-less etc. They certainly don't say YES because they know what they're doing. You have to ask the yokels for the true medical facts there. They tell one another around the stove and watch their backs.

Statistics on every donor data site shows organ donors to be 99% white and college-educated, in other words WASPS. Put together with YES we get "YESP."

The goal here is to have white people read this and think, "Oh I'm SO glad I am never stereotyped." This tactic probably has a name in deceit manuals (which are not called Deceit Manuals so I don't know where to find one). It'll sound something like "notion or status reinforcement..."

If bioethics people were to be ethical and live up to their true goings-on, they would be in the laundry business. Mind you, that wouldn't work either because laundries don't hide white issues.

Hmm... It would probably be more fitting if they went into the patio business. All they do is sit around and talk about what to do tomorrow.

[Shawn Richard]

Unfortunately, this is the first time that I have come across your blog of the presentation that I gave earlier this year. I read your take on what I said and the comment above, and I want to clarify a few things.

Race does not equal ancestral geographic origin and, in my view, should not be used when talking about pharmacogenomics. Historically, in North America, we have used "Black" to describe people who are perceived as sharing similar physical characteristics--dark skin, curly hair, etc. Black has been used to describe African Canadians who have immigrated from the the United States of America, Grenada, Peru, Nigeria, Itlay, Eritrea. Superficially they all look similar, to some. However, genetically a Black person from the United States of America may share very few genetic traits with a Black person from Eritrea. We use ancestral geographic origin to describe people who share a set of genetic traits and have common recent ancestral origins in a particular part of the world. Some of those genetic traits determine how they will respond to drugs. So I don't think it's useful to talk about White drugs or Black drugs.

More importantly, pharmacogenomics is not yet (and may never be) at the stage where we can design drugs for people based on ancestral geographic origin. However, if we can eventually, we should ensure that essential drugs are developped for people who are from places lacking the infrastructure, resources or both to develop them. The essential criteria here is not race but need.