Saturday, March 23, 2013

Are Bioethics and Developing World Bioethics institutionally racist?

The answer appears to be 'yes' if you believe a Letter to the Editor published recently by our colleagues at the Journal of Bioethical Inquiry. Three authors (one from India the other two from the USA and the Netherlands respectively -  ie two thirds from the global north, I'll get back to that!) decided one way to ascertain whether there's institutional bias toward the rich world's problems in bioethics journals would be to investigate the country location provided for the journals' editors as well as their editorial board members. They picked 14 journals, looked at their overall number of editorial board members and divided them into groups based on the Human Development Index into Very High and High, Medium and Low. To no one's surprise they discovered that the vast majority of Editorial Board members hail from Very High and High HDI countries. You might wish to note that High HDI includes countries such as Jamaica, Malaysia, Grenada, Brazil, Iran and so on and so forth. The current list is here. So, by lumping countries such as Germany and Jamaica into one category (ie by lumping together Very High and High HDI) the authors of the letter have arguably created the particular outcome they needed to mount their criticism, namely the underrepresentation of bioethicists from developing countries on bioethics journals editorial boards. They discovered that 95% of editorial board members hail from these countries. These countries, of course, include countries as far apart in terms of development as are Germany and Libya.

Surprisingly this question begging bean counting activity must have passed peer review at the Journal of Bioethics Inquiry. Well, or it passed the editorial judgment of whoever is currently in charge at that journal. 

Now, fair enough, it is reasonable to be concerned about bioethics focus on the - often times decadent - problems of folks in the global north while ignoring more serious issues confronting people in the global south. I certainly feel passionately about this and have done my best during my years as one of the Editors of Bioethics and as one of the Founding Editors of Developing World Bioethics to remedy this situation. Let me show you how this pans out in the Letter writers analysis. I mentioned already that they're lumping - unreasonably - together folks from Germany and Jamaica or Australia and Dominica to generate the scandal they are keen on exposing. Bioethics is listed here as a journal with zero representatives from medium and low HDI. Brilliant insight. Here is the context the Letter writers ignored - were too busy investigating. 

On my initiative, more than a decade ago, while I was working full-time as an academic in South Africa, we made a considered decision to 'sacrifice' some of the Bioethics print real estate (ie the number of print issues we could produce in a given year) by starting a companion journal dedicated exclusively to developing world issues, and so Developing World Bioethics was born. Its distribution is identical to that of Bioethics, so wherever Bioethics is available in a personal or institutional subscription, there is also Developing World Bioethics. You could argue now that that surely was just a means to shunt aside issues affecting the global south, but incidentally the success of Developing World Bioethics in competitive journal impact rankings (where it does better than many mainstream bioethics journals) suggests otherwise. Criticizing Bioethics then for not having editorial board members from medium to low-income HDI countries completely misses the point of this arrangement. It constitutes unfair and uninformed criticism. Incidentally, 2/3rds of the Letter's authors hail from countries of the global north. Their own logic applied to their own letter would suggest that that somehow isn't a good thing. 

A more serious omission by the authors is their decision not to undertake actual serious qualitative research.  After all, the Letter writers have not even bothered to undertake an actual content analysis to investigate (and demonstrate) that the problem they are concerned about exists. Instead they say this, 'Scanning 4,029 research articles in nine bioethics journals, Borry, Schotsmans, and Dierickx (2005) found that developing country scholars contributed fewer than 4 percent of publications (the other 96 percent coming from authors working in developed countries). It is no surprise, then, that bioethics pays more attention to esoteric ethical problems facing wealthy nations than it does to issues such as poverty, hunger, and health inequities that are global in nature.'

You might wish to note that the study they cite ignored Developing World Bioethics. There's something amusing about scholars trying really hard to show how badly the global south is done by by mainstream bioethics, yet they have to resort to unnecessary acts of omissions, such as ignoring journals dedicated exclusively to this issue. They also ignore something else: many journals focusing strongly on these issues (in China, in Brazil, in Iran and so on and so fourth) do not feature on their list.  Why should non-English speaking academics working in the global south submit content to English language journals that are not widely read in their home countries? Are they doing wrong, in the eyes of our Letter writers, when they focus on journals in their mother tongue that are actually locally read by their fellow country men and women? 

My bone of contention with the authors of this Letter (and the Editors of the journal that published it) is that the research that it is based on is shoddy at best; that even if it wasn't as shoddy as it is it would still not have been able to show what needs to be shown, namely that the absence of editorial board members from the countries in question is the cause of bioethics lack of focus on issues the Letter writers are rightly concerned about.

Arguably today more content than ever before is produced by bioethicists on these issues. Perhaps not enough, but since Developing World Bioethics has come into being a lot has changed for the better. Journals such as the Journal of Global Ethics, Metaphilosophy, Public Health Ethics and others continue to produce high-quality outputs on the issues the Letter writers are concerned about. 

Friday, March 22, 2013

Open Access Issue: Special Issue: Field workers at the interface between research institutions and local communities

Cover image for Vol. 13 Issue 1

Developing World Bioethics

© Blackwell Publishing Ltd

Volume 13, Issue 1 Pages ii - iv, 1 - 56, April 2013

Special Issue: Field workers at the interface between research institutions and local communities
The latest issue of Developing World Bioethics is available on Wiley Online Library


Field Workers at the Interface (pages ii–iv)
Sassy Molyneux, Dorcas Kamuya, Philister Adhiambo Madiega, Tracey Chantler, Vibian Angwenyi and P. Wenzel Geissler
Article first published online: 22 MAR 2013 | DOI: 10.1111/dewb.12027


Evolving Friendships and Shifting Ethical Dilemmas: Fieldworkers’ Experiences in a Short Term Community Based Study in Kenya (pages 1–9)
Dorcas M. Kamuya, Sally J. Theobald, Patrick K. Munywoki, Dorothy Koech, Wenzel P. Geissler and Sassy C. Molyneux
Article first published online: 21 FEB 2013 | DOI: 10.1111/dewb.12009
Engaging Communities to Strengthen Research Ethics in Low-Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal Kenya (pages 10–20)
Dorcas M. Kamuya, Vicki Marsh, Francis K. Kombe, P. Wenzel Geissler and Sassy C. Molyneux
Article first published online: 21 FEB 2013 | DOI: 10.1111/dewb.12014
‘She's My Sister-In-Law, My Visitor, My Friend’ – Challenges of Staff Identity in Home Follow-Up in an HIV Trial in Western Kenya (pages 21–29)
Philister Adhiambo Madiega, Gemma Jones, Ruth Jane Prince and Paul Wenzel Geissler
Article first published online: 22 MAR 2013 | DOI: 10.1111/dewb.12019
Ethical Challenges that Arise at the Community Interface of Health Research: Village Reporters’ Experiences in Western Kenya (pages 30–37)
Tracey Chantler, Faith Otewa, Peter Onyango, Ben Okoth, Frank Odhiambo, Michael Parker and Paul Wenzel Geissler
Article first published online: 22 MAR 2013 | DOI: 10.1111/dewb.12023
Working with Community Health Workers as ‘Volunteers’ in a Vaccine Trial: Practical and Ethical Experiences and Implications (pages 38–47)
Vibian Angwenyi, Dorcas Kamuya, Dorothy Mwachiro, Vicki Marsh, Patricia Njuguna and Sassy Molyneux
Article first published online: 22 MAR 2013 | DOI: 10.1111/dewb.12015
Feedback of Research Findings for Vaccine Trials: Experiences from Two Malaria Vaccine Trials Involving Healthy Children on the Kenyan Coast (pages 48–56)
Caroline Gikonyo, Dorcas Kamuya, Bibi Mbete, Patricia Njuguna, Ally Olotu, Philip Bejon, Vicki Marsh and Sassy Molyneux
Article first published online: 21 FEB 2013 | DOI: 10.1111/dewb.12010

Bullet Point Ethics as Policy Advice?

Bioethics as well as various specialties within the field (research ethics and public health ethics among them) is more often than not policy oriented. This is not terribly surprising, seeing that sound ethics aims at providing action guidance as well as action justification. It remains, of course, a bone of contention among ethicists and philosophers whether this can actually be achieved in the absence of final answers to fundamental meta-ethical questions. Let us leave this thorny issue aside for the moment.  A consensus seems to exist at least among bioethicists and others engaged in applied ethics that we can and should press ahead regardless of those intractable final answers and that we should utilize the tools of ethical analysis to address real-world problems.

Ever since Tom Beauchamp and James Childress hugely successful Principles of Biomedical Ethics entered the textbook market place principles have become a popular teaching tool in many a medical school. Among philosophers these principles have not been as successful as they are among teachers in medical schools, mostly because of concerns about their lack of action guidance and action justification.  Debates among bioethicists about the viability of the Georgetown Mantra will undoubtedly continue, and these debates certainly are to be welcomed. If nothing else, they have already led to marked improvements to the Principles of Biomedical Ethics through its various editions.

However, in the aftermath of the Principles ever more policy guidance documents disguised as ethics guidelines have entered the market place. While I have not undertaken a proper survey of all of these documents, it is my impression that they are particularly prevalent in public health ethics. What is disconcerting about these documents is that they have taken the Principles approach to a whole new level of arbitrariness. Arbitrariness in the sense that while they aim to assist policy-makers in developing action plans for anything from SARS to clinical research to obesity they actually permit arbitrary actions. Vacuous criteria are abound in this new enterprise. A quick search of the literature offers anything from respect for ‘human dignity’ to special attention that must be paid to never clearly explicated ‘vulnerable’ people. Conceptual ethical frameworks are replaced by bullet point lists of the pleasant-sounding. Take all the pleasant-sounding somehow into consideration and you will reach an ethically defensible end-point, or at least an end-point that will give you another shot at high office when the next elections come around.

To be fair, there are a few good reasons for these bullet point lists. Policy makers must take into account the plurality of normative views held in the societies they represent, hence a straightforward consequentialist, deontological or virtue ethical approach would not persuade many. It is also worth noting that many professionals who are not ethicists tend to like bullet point style principles. They use them as guiding lights (deontic constraints, name it) in their search for an ethically defensible answer.

However, considering that these sorts of bullet point lists are frequently supposed to function as an ethical backstop in times of, for instance public health emergencies, it seems unacceptable - to me at least - that they can be used to justify any and no action at all.  Given that their strong selling point is that they are more practical, and that they can be easier operationalized and used by professionals hailing from other disciplines, I cannot help but wonder why there is no evidence that they work better in terms of providing action guidance and action justification than old-fashioned ethical analysis in times of crisis or indeed in preparation for a public health crisis.

Should we not aim higher than this lamentable status quo?

Tuesday, March 12, 2013

The Junk 'Food' Wars Continue

Belatedly policy makers have woken up to the fact that the largest disease burden in the world is caused by chronic diseases. They have begun to zoom in on 'food' products known to contribute to obesity. The thing about obesity is that it is linked to a whole gaggle of expensive-to-treat diseases, including diabetes, heart disease and so on and so forth. It is also linked to lower life expectancy and other such niceties. It turns out, soft drinks are a known significant contributor to obesity. Politicians such as New York City's mayor Michael Bloomberg have come up with a plan to reduce the maximum size of the containers that soft drink products are delivered in. They clearly hope that that might reduce soft drink consumption, to some extent at least. Public health experts have lauded Bloomberg's initiative. Others have suggested limiting advertisements for such products to times when children and teenagers ain't watching TV any longer.

When you think about it, Bloomberg's policy proposition isn't that different to what we do with regard to other known health hazards such as smoking and alcohol. If anything his policies are probably not far reaching enough. However, it is reassuring that voluntariness on part of the soft drink producing industry isn't relied on any longer. It cannot possibly deliver the required results, simply because these companies must be interested to sell as much of their products as is feasible in order to satisfy their owners' (ie their shareholders) financial interests, lest they will be punished by the financial markets.

Here are some fun facts related to the issue, 'Several studies have shown that the rate of type-2 diabetes has soared at just the same rate as intake of high-fructose corn syrup -- the favored sweetener in many soft drinks -- has risen. Soft drinks such as Coca-Cola were sold in 6.5-ounce bottles in the 1920s. Now the 12-ounce can is standard but fountain drinks are sold in sizes up to 64 ounces -- or the equivalent of eight of these cans of soda. One 64-ounce drink carries more than 800 calories.'

Well, yesterday Bloomberg's new regulations for New York City were halted in their tracks in court. Nothing new on that front either, cigarette companies also dragged the inevitable out by means of seemingly never-ending court proceedings. Even the arguments deployed during the cigarette wars and those deployed now are eerily similar. One would hope Bloomberg and - more importantly - his successor will keep their nerves on this. I saw Bloomberg last night on the Letterman show (yep, guilty as charged, I watch the Late Show) and he mentioned some staggering figure like 5,000 New Yorkers die every year as a result of obesity related complications. The cost of treating - just in that city - obese people's avoidable health problems reaches multi billion $$ each year.

Here comes the inevitably Onion style response from US Republicans. NPR reported that in Mississippi, a state where 1 out of every 3 adults is about 30 pounds (!) heavier than what would be a healthy weight, state Republicans are moving to legislate that counties and towns must not enact rules like those proposed by Michael Bloomberg, including rules that require calorie counts of meals and drinks to be posted, that cap portion sizes, or that keep toys out of kids' meals. It goes without saying that the restaurant, beverage and chicken producing industry was behind this initiative. Which arguably supports again the point that it ain't public-private partnerships and voluntary industry action that is called for, but government regulation. That industry should lobby to withhold basic information from its customers, in order to prevent them from making informed choices at least about the food products they digest, tells you truly all that you need to know.

Wednesday, March 06, 2013

Stop demanding that academics 'resign' just because you dislike what they have to say!

There is something strikingly odd about activists asking academics they disagree with to 'resign'. This happens ever more frequently (look out for an up-coming issue of the Journal of medical ethics dedicated to an affair that led to a worldwide effort aimed  at removing junior academics from their jobs because of an academic paper they wrote!) In the particular case that I will be writing about the academic in question is actually an emeritus professor (ie the academic is retired and cannot actually resign in any meaningful way, not even when bullied by a rabid activist outfit). 

Well, Gareth Jones, a well-regarded bioethicist at the University of Otago Bioethics Centre, published a piece in the New Zealand Medical Journal. Check out the article, it's available as an Open Access document at the time of writing. The article, co-authored by Jones with a student at the Centre, Robert Cole, defends prenatal screening for Down Syndrome. They defend essentially the introduction of Non-Invasive Prenatal Diagnosis (NIPD) instead of a more invasive technique that is currently used. The piece, by any stretch of the imagination, is uncontroversial. All that Cole and Jones point out is that as a society New Zealand is at ease with prenatal testing for Down Syndrome. Testing enables pregnant women to make reproductive choices according to best clinical information and according to their own reflective values. Enabling them to do this earlier on during pregnancy, courtesy of technological advances, seems a no-brainer, that is unless you are an anti-choice (aka 'pro-life activist') of the variety that led to Monty Python's every sperm is sacred song in their movie Meaning of Life

There are several arguments that have been deployed against testing by disability rights activists and assorted supportive anti-choice folks. These arguments essentially propose that disability doesn't necessarily impact negatively on someone's quality of life. I do think this argument is difficult to sustain on an all other things being equal basis of comparison. They also argue, and this is something any decent society should be concerned about, that an attitude suggesting that it is ok to abort defective fetuses (in their lingo they usually are described as 'unborn children' - you know, like unborn Nasa pilots, unborn painters, that sort of contradiction in terms) would eventually lead to forms of unfair discrimination against people with Down Syndrome.  This could include outright discriminatory attitudes including making fun of disabled people, blaming them unfairly for their condition and so on and so forth. It could also include a reduction in funding society would make available to the smaller number of disabled people coming into being despite screening efforts.

Well, in a liberal society the final word on whether or not the pregnancy is carried to term rests with the pregnant woman (and possibly her partner). There should not be unfair pressures from health care professionals to abort. Cole and Jones also note that there is no evidence that fewer disabled people would necessarily lead to a reduction in societal support services. NIPD could be used very early on in pregnancy (7-10 weeks). That is wonderful news, because fetuses are unable to experience pain before the 24th week of pregnancy. If one holds the view, as I do, that sentience is a necessary condition for moral standing, NIPD is great news, because it would permit women to choose an abortion knowing that their choice would not cause actual pain and suffering to the developing fetus. 

Strangely activists are up in arms about Cole and Jones, demanding that emeritus professor Jones 'resigns'. It goes without saying that their arguments are wrong headed, even if one ignores that retirees have some difficulty resigning from their posts. As always when it comes to this sort of activism there's nice rhetorical games that are being played with language. Accordingly we find statements such as this, 'People with Down syndrome must be accorded the full respect and acknowledgement of human rights that are afforded to other New Zealanders.' Of course, this is precisely what Cole and Jones state in their article. One shouldn't confuse fetuses with real people though! On said activist website there are also statements pronouncing that testing may only be done if it is ideologically anti-choice (ie 'pro-life'), 'To ensure that antenatal screening exists only to provide unborn children with Down syndrome and their parents with life-affirming, unbiased care through education, support and understanding.' That, of course, is unacceptable. One could have an argument about the question of whether or not there should be non-directive counselling, but to suggest that pregnant women should be subjected to anti-choice (ie 'pro-life') agitprop is clearly unacceptable in a liberal society. The objective must always be to provide pregnant women with unbiased, factual information and ensure that they can make their reproductive choices in a non-judgmental environment. This is not quite what the anti-choice activists have in mind on this subject. They have already made up her mind on behalf of the pregnant woman. 

May I suggest to our activists friends out there the following: deal with the arguments Cole and Jones (and many others like them) put forward for discussion by means of countering with sound arguments of your own. Your kind of resignation-demanding bullying is truly uncalled for.

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