Balneus

Australian Lefty on Politics, Governance, Science and Info Management

Indigenous health and clinical trial protocols

Posted by Dave Bath on 2008-05-21


If we want to improve the depressing health metrics for our indigenous population, it is worth debating the value of race-related basic medical research and clinical trials.

A recent paper (doi:10.1038/sj.tpj.6500489) expands on the ethics of race-related research protocols in the context of the efficacy of Bidil, a cardiovascular drug, that works best in self-identified African-Americans.  Combine this with other research (doi:10.1038/sj.tpj.6500471) that points out the correlation of drinking behaviour patterns to Alcohol Dehydrogenase (ADH) variants that have differences in frequencies between racial groups, and we have a strong suggestion that government intervention to stop the disastrous effect of alcohol in indigenous communities needs to take into account racial differences.

Of course, ADH is merely one factor – but I cannot find anything on alcohol dependence and ADH variants are in our indigenous groups (note the 2003 Amercian Journal of Psychiatry paper "Protective Association of Genetic Variation in Alcohol Dehydrogenase with Alcohol Dependence in Native American Mission Indians" and the 1999 genetics paper "Linkage disequilibrium at the ADH2 and ADH3 loci and risk of alcoholism" which covers variations Chinese populations in Taiwan), although I only did a fairly cursory search.

So, we might have different influences on alcohol consumption behaviours and reactions to alcohol based on racial differences, and this might mean interventions that work with the caucasian population will not be as appropriate for indigenous communities.

There may be other racial differences in the aetiology and best treatments for other diseases that lead to such obscene disparity in health outcomes between caucasians and the indigenous population, just as Bidil helps the heart health of negroids but not caucasians.

Do we know enough?  Perhaps we should establish a well-funded research centre for such issues in Alice Springs.  This might not only improve health outcomes, but provide an extra incentive for aboriginal kids to pursue an education in the health sciences.


Notes/See Also:

  • The full ethics paper title: Séguin,B; Hardy,B; Singer,PA; Daar,AS : Bidil: recontextualizing the race debate in The Pharmacogenomics Journal (2008) 8, 169–173; doi:10.1038/sj.tpj.6500489; published online 15 January 2008.  And no, although it’s Peter Singer, it’s a Canadian bioethicist, not the Australian one.
  • Janne Schurmann Tolstrup; Børge Grønne Nordestgaard; Søren Rasmussen; Anne Tybjærg-Hansen and Morten Grønbæk: Alcoholism and alcohol drinking habits predicted from alcohol dehydrogenase genes in The Pharmacogenomics Journal (2008) 8, 220–227; doi:10.1038/sj.tpj.6500471; published online 9 October 2007
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13 Responses to “Indigenous health and clinical trial protocols”

  1. […] Indigenous health and clinical trial protocols […]

  2. Perhaps you should talk to the Clinical Research Centre of Excellence for Aboriginal Health and see what they are up to?

    Just wondering though, would indigenous people readily participate in clinical trials, and what would be the conditions necessary for them to participate?

  3. Dave Bath said

    Janelle,
    You are obviously in a much better position to answer your questions than I (and doubtless have better contacts)!

    To others, I recommend having a look at Janelle’s site: http://www.accesscr.com.au/, which is trying to improve access to clinical trials information, and encourage volunteers, among other worthy things.

    As you suggested, I looked around the NHMRC, and could see lots of surveys regarding indigenous health, but little that did not seem to “blame” sociological problems for poor health outcomes rather than investigating biochemical differences. I tried googling around for ADH (an obvious candidate given that scale of the alcohol problem) and australian indigenous populations, and found pretty much zilch.

    The Bidil debate in the US presents an interesting model of politically correct philosophies labelling the research as racist, and now gradual acceptance.

    It’s a similar thing for gender-specific medicines (and indeed, in pregnancy methylated xanthine metabolism falls, then after pregnancy, goes way up to 50% above pre-pregnancy levels). The problem is, we cannot really test drugs of pregnant women (or indeed, those who MIGHT become pregnant). But this is the wider issue.

    What I’d HATE to see is a public outcry over “racist” research in Australia, because such research is necessary. Widening the debate on clinical research to benefit subpopulations, and how funds are allocated, how results are turned into clinically available solutions… well, that’s something we need as well.

    Janelle is MUCH more up on these things than I.

  4. Dave Bath said

    Grabbing the erudite Gummo Trotsky’s comment to my comment on his phrasing in http://clubtroppo.com.au/2008/05/22/missing-link-daily-68/ of this post (“Dave Bath suggests medical research on health problems specific to indigenous Australians would be a good idea. “) is as follows….

    And the reason I chose that phrasing is that as soon as you moot the idea of researching biochemical differences between races and race specific medical therapies, some numb-nut is going to use it as an excuse to defend or advocate research into behavioural and cognitive differences between races.

    To make my own position clear, I think that the research you suggest would be valuable, perfectly proper and ethical, while the numb-nut proposals wouldn’t be. It’s a tricky business – how do you advocate real scientific research into the effects of genetics on biochemistry, physiology, perhaps even neurology, without a lot of pseudo-scientists attaching their parasitic little selves to your coat tails?

    Gummo correctly sees the dangers of “numb-nuts”, and I see the dangers of knee-jerk “politically correct” reactions. Both are harmful to this important problem we need to solve, unless we want Rudd’s apology earlier this year to be hollow.

  5. Nuwalk said

    While good studies are not necessarily a bad thing what you are suggesting is a distraction from the real issues. Why on earth do you need to worry about clinical trials when there are clear and certain links to poor health and lack of education, transport, housing etc.

    The article below sums it up pretty well.

    http://www.abc.net.au/news/newsitems/200704/s1898479.htm

    Last Update: Monday, April 16, 2007. 3:50pm (AEST)
    Indigenous diabetes gene a fantasy, says researcher

    A new study by the Menzies School of Health Research says Indigenous people do not have a genetic predisposition for diabetes.

    The report, called Racialised Genetics and the Study of Complex Diabetes, says the theory that Indigenous people have a special gene for getting diabetes is not true.

    The author of the report, Doctor Yin Paradies, says social and environmental factors are to blame.

    “What we’re finding actually is although genes are important for everybody in society, for Indigenous people the high rates are caused by environmental factors like stress, low birth rate and other factors associated with poverty,” he said.

    Dr Paradies says scientists have been looking to find a gene in Indigenous people that causes diabetes for more than 30 years.

    “What we’ve found is there’s no evidence for a gene,” he said.

    “They’re looking for a gene for diabetes, particularly in Indigenous people, and there’s been a number of studies and we simply haven’t found one and so we should move on and look at other factors.”

  6. Dave Bath said

    Nuwalk
    I certainly won’t deny the environmental factors, and the urgency of taking action now. Your example of diabetes 2 is a good one to illustrate your position – but I’d note we cannot deal with it in mainly caucasian societies (because we treat commercial interests as sacrosanct). Poor social infrastructure, including the difficulties of transporting better quality food to remote areas, merely makes our general failure to deal with this problem more obvious in this specific case. If we don’t know how to deal with it in cities, the easier case, there is almost no chance we can help disadvantaged groups in remote areas.

    You are absolutely correct that action on better social infrastructure is something that can be done NOW.

    However, we know that ADH variants influence drinking behaviour, and therefore different types of interventions are more likely to succeed than others. If we had, and used, information on these variants, we might be able to design better ones, or at least avoid interventions less likely to succeed. As I noted, it’s hard to find papers on our indigenous population’s ADH variant profile.

    The more general issue, prompted by the Bidil case, which helps with a “generic” disease, but with race-specific efficacy, is something we need to process through public debate, and this includes research involving subpopulations, the drug registration/subsidy processes… It would be a shame if some useful drugs are held up by a pressure from “politically correct” types who are yelling “racist”, and harm those groups they want to assist.

  7. Nuwalk said

    I do not follow your point on commercial interests. I would argue that we cannot deal with diabetes in mainstream society because we are not dealing with their upstream causes not because of commercial interests.

    I am not discounting your argument about racial differences I just don’t think those differences matter enough to warrant clinical trials. Indigenous Australians are perhaps the most researched people in the world. It has been argued that this has actually been damaging to Indigenous health. The problems of Indigenous health have almost nothing to do with medical services. There are some issues regarding access, appropriateness and control of medical services, but except for the few prevention activities undertaken medical services deal with people when they are already sick and it is too late. Once housing, education and access to the broader economy are sorted out then you can look more closely at medical services and only after that would I be worrying about clinical trials for racial differences.

    To relate it to a current hot topic I would equal the impact of racial specific drugs on Indigenous Health to the impact of the liberal policy of removing 5c excise on petrol to the overall price in the current economic climate. To use a NT saying it would have about as much impact as a fart in a cyclone.

    It could also potentially harm the people being studied and also assumes Indigenous Australians are all the same when there are many distinct groups. It may very well be that racial differences are also found within the Australian Indigenous population itself.

  8. Thanks Dave for your comments on my website.

    To be honest, I’ve not worked in trials with indigenous participants, hence my questions. I saw some interesting talks on indigenous medical research at a conference earlier in the year, by indigenous community members which suggest they themselves are interested in more of this research. The barrier seemed to be getting engagement with the community, which was better facilitated when trials were run by indigenous researchers.

    I don’t consider it so much a racial debate, as one which is about understanding the best way to use medicines. There is no doubt there are differences in the effectiveness of some medicines due to genetics. In a world where we are moving more quickly towards individualised medicine (treating the individual, rather than assuming one-size-fits all), understanding genetic differences is just one element of ensuring we are using medicines in the right people at the right time.

    Further to other comments, this doesn’t mean I am advocating that understanding genetic differences in clinical trials is of the highest importance when there are many current issues facing indigenous people, as described above. It is something however that will need to be addressed at some time in the future , if we want to ensure indigenous people have the access to medicines, and the right medicines, and hence help raise the life expectancy of indigenous communities.

  9. Dave Bath said

    Janelle – I agree that clinical trials and race-specific medicines are not highest priority, and agree that this issue of race-specific medicine needs to be addressed “sometime in the future”, but think it will take some time to get past public knee-jerk opposition – which is why I raised it.

    Your comment “conference earlier in the year, by indigenous community members which suggest they themselves are interested in more of this research” is encouraging.

    Still, it can’t be THAT hard looking for ADH variants across subpopulations – especially with modern machines that go “ping” – and it might point to which counselling strategies are more likely to work in alcohol-affected communities.

  10. Dave Bath said

    I’ll also point to Janelle’s post about gender-specific trials, an issue that has exactly the same intellectual structure, and analogous political undertones, as race-specific trials.

  11. Like anything Dave, money makes the world go round. So any research is possible, when it is funded. :)

  12. Dave Bath said

    Janelle:
    I wonder how much it would cost to get undergrad biochem pracs doing specific tasks that vary from year to year, rather than do the same old thing every year in every institution? Yeah, the methodology might not be as clean as if the assays were done by postgrads, and transport of samples before degradation might be an issue….

    Might make the courses more interesting too…

    Hmmmm… this is an idea for a separate post methinks.

  13. […] Bahnisch wonders if he missed the immigration debate. Dave Bath suggests medical research on health problems specific to indigenous Australians would be a good idea.  Kim gives plaudits to Ross Gittins’ latest article on the whingeing […]

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