How can we ensure that the global south benefits from and contributes to the field of bioethics?

Here's a re-post of my Editorial in the current issue of Developing World Bioethics. I will update toward the end of the Editorial relevant information about the upcoming IAB World Congress in India, as some things (like the location) have changed since the Editorial was published.

There has been a legitimate debate going on for many years about the question of how we can ensure that colleagues in the global south can both benefit from journals such as this, as well as contribute constructively to it.

The issue of access to subscription‐based journals has been litigated ad nauseam and I do think global publishers have done by and large a decent job in terms of implementing with WHO and other agencies myriad access themes available to those countries too resource‐constrained to afford regular subscriptions.1

Some authors disagree, insisting that only Open Access journals, a supposedly superior business model, can address the access problem adequately. And they are right, Open Access journals, by definition, pose no access problems of the kind subscription‐based journals pose. Sadly, having your cake and eating it too rarely works in the real world, and so these authors, having resolved the access to academic research problem, are faced with a different problem they did not have before. Open Access journals can only survive as viable enterprises if a sufficiently high number of authors pay what are often expensive article processing charges, or APCs. These journals often offer their equivalent to the access schemes subscription‐based journals have put in place, namely differential fees or fee waivers for those who absolutely cannot afford to pay.

Short of asking academics to exploit themselves by volunteering to produce and disseminate academic journals and their content, reliably, over decades, someone will have to pay for the resource intensive production of journals and to ensure the reliable availability of their content.

I have yet to see from those complaining about access problems realistic solutions to this challenge. They mostly, and typically correctly identify the problem, but beyond grandstanding they offer no answers. They expect someone else to sort things out for them.

As I said, authors in the global south can access our content either by means of the access schemes mentioned earlier, or by simply emailing the authors of content they are interested in and by asking those authors for a complimentary electronic copy of their article. Nobody would decline such a request.

I do think that a much greater challenge is to enable scholars from the global south to participate in international conferences and workshops both to share their own knowledge, but also to learn from colleagues and to network with a view to establishing research partnerships and the like.

I suspect you will know Facebook. I posted a photo from a workshop I had organised in the summer of 2017 in the UK, on the most recent version of the Council for International Organizations of Medical Sciences (CIOMS) research ethics guidelines. Not unexpectedly a colleague, located in an upmarket London‐based university, harangued me for the lack of diversity, perhaps most significantly, the evident lack of attendees from the global south. That colleague was right: only two of the 25 or so workshop delegates came from the Caribbean, while everyone else came from countries of the global north. Of course, I had virtually no funding to organise said workshop, and everyone who travelled there paid their own way. Nobody's flight was covered by me. I did have inquiries from various colleagues in the global south who would have loved to attend, but quickly gave up on the idea due to lack of funds for their travel expenses. The colleague who criticized me quite publicly, naturally, had no funds to offer either. It is always easier to criticize than to contribute meaningfully to change. The same, as I tried to show, holds true for academics who refuse to acknowledge the cost involved in producing academic journals.

Some constructive attempts have been made to have a more globally representative group of conference goers presenting at and attending international bioethics events. A successful example of this is the Global Forum on Bioethics and Research. The GFBR has been around for a longish time. It's funded mostly by the UK's Wellcome Trust, the Gates Foundation, the US NIH Fogarty International Center and the UK's Medical Research Council. I had a quick look at the GFBR's website, with a view to finding out who governs it, and who decides on the composition of speakers and attendees of its meetings, given that its funders reside essentially in the USA and the UK. It seems to me as if the majority of those people are either staff members of these funding organisations, or are past/current grant recipients.2 There appear to be very few truly independent scholars from the global south among those in charge of organising these global events.
I don't think that this is the result of any kind of malicious intent. It's likely a function of ‘who do we know who could serve on that steering committee who is from Africa, Asia etc’, and who does one know? Well, the answer is likely to be: ‘someone we have funded before’.
However, that alone does not address the question of whether or not the meetings are failures when it comes to the question of participants from the global south. Here are the criteria the GBFR uses to determine who among the applicants will be invited3 :

• Country of origin: GFBR would like to ensure a representative distribution of delegates from different regions;
• Background /current area of expertise: GFBR is aimed at anyone involved or interested in health research ethics, including researchers, policy‐makers and community representatives. GFBR seeks representation from many different disciplines;
• Membership of an IRB/REC: Membership of an Institutional Review Board / Research Ethics Committee is not a prerequisite for attending GFBR, but may be taken into consideration;
• Experience of ethics: GFBR encourage s a mixture of ‘old’ and ‘new’ faces at each forum so that participants can productively discuss issues of concern to them and gain from the perspectives of others. Applicants need not be experts in ethics;
• Reasons for attending the meeting: GFBR seeks participants who will be able to actively contribute to the meeting and who expect to impact on research ethics and/or pursue a career in research ethics in their own country.

While there is the inevitable number of people who presumably just have to be at every such meeting (let's call them ‘old’ faces), the GFBR has succeeded in terms of attracting a fairly wide range of delegates from the global south to its meetings over the last few years. It's a small (and expensive) meeting, designed to host about 80 delegates, but it's probably a meeting as good as they come on the global bioethics scene. I truly wish there were more such events on the global bioethics events’ calendar. I do encourage you to give thought to how this sort of event can be replicated, for other areas of bioethics, ie. not the typically well‐funded area of research ethics but, say, for reproductive health, global health, and so on and so forth.

Let me end this editorial by encouraging you to attend the next World Congress of the International Association of Bioethics. It will be held in Bangalore from 4–7 December 2018 under the theme Health for all in an unequal world: obligations of global bioethics and is locally hosted by SAMA, the resource group for women's health, the Forum for Medical Ethics Society, and, of course, the IAB.4 With a bit of luck (and planning) there might be a plenary dedicated to figuring out how to enable more delegates from the global south to attend such events. Why don't you propose to organise such a plenary to the India‐based hosts of the event? They might consider it quite seriously.

Notes

• 1 Schuklenk U. 2015. Fighting Imaginary Enemies in Bioethics Publishing. Bioethics 29(8): ii‐iii. Schuklenk U, Magnus D. 2017. Justice and Bioethics: Who Should Finance Bioethics Publishing? AJOB 17(10): 1‐2.
• 2 http://www.gfbr.global/about-the-gfbr/ [Accessed 28 November 2017].
• 3 http://www.gfbr.global/forum-meetings/ [Accessed 28 November 2017].
• 4 http://www.iab2018.org [Accessed 12 April 2018]

A step closer toward our species' demise

For awhile there was some hope that as a species we might be able to survive a tad bit longer. Courtesy of the world economic crisis car production went down dramatically, oil consumption plunged to new lows - good news all round, in other words. Unfortunately, in that sparsely populated country called India some company called Tata has decided to do something about this. It has just brought to market the world's cheapest car. Ain't that fantastic news? It's hailed on the news as a great great success story. India, instead of building appropriate and efficient public transport systems (should be an economic walk in the park, seeing the population density in that country!), is getting a billion small cars to clog up its already choked-up streets. Hurray, we're well back on the road to our permanent exit. Indeed, economic growth is predicted to return in a couple of months. Sorted!

Should skincolour manipulating products be developed and sold?

Nice article today on the CBC news website. Some students from Carleton University have developed yet another cream capable of whitening the skin color of darker skinned people. It's kinda old news, due to continuing racist ideologies insisting that a lighter skin coloration is kinda better than a darker skin coloration, skin lightening products have been on the market for a very long time. You'll find them in most drug stores in places where larger numbers of darker skinned folks live. In many parts of India it is common knowledge that the darker a young woman is, the more difficult it will be for her to find a husband (or her family for her - don't ask). Now, the question is, of course, whether one should aid such skin color related prejudices by means of developing products that permit folks to lighten their skin color. We should never develop any kind of technologies that serve such purposes. They will only prolong the existence of such prejudices over time, because the cremes in question will be seen as an easy way out of the dilemma by many, while really they help cementing views about the inferiority of particular skin colors.

The inventors of the concoction in question insist that they're no racists (a claim likely to be true), and that in fact their creme could also be utilized by folks wanting to darken their skin color.

At first this seems an innocent enough idea then, as the technology kind of cuts both ways. It stops being innocent when we ask ourselves why some light skinned people like to look a bit darker (but not really dark, of course). The reason is that to many pink skinned folks a slightly darker look translates into ideas of vacation (you know, beach, sun and tequilas) and health. Of course, darker skinned folks will not have this kind of motive in mind. They are more likely to think that they might move up in societal status if they're lighter skinned. Equating then the two possible utilisations of the technology seems remarkably naive. Interestingly, one of the students is from India and should be painfully aware why such products are so popular in that country, yet clearly it doesn't seem to have hit home that, big as that market might be, it's nonetheless a market created by racist interpretations of skin color.

So, in the same way that I would not want a prenatal genetic test predictive for homosexuality in a homophobic society (even if it could be also used by homosexuals to detect heterosexual etc etc), I would not want to see products on the market that support racist societies' take on skin coloration.

Courts and ethicists

You know, I have always been somewhat dismissive of the law as a good means to take forward political causes. I always thought one needed to win the substantive normative argument first, and then, somehow, miraculously the law would fall into line. Well, while I worked in South Africa for a couple of years, the Treatment Action Campaign there gave me much food for thought. They used legal cases to advance usually sensible policy matters. Of course, sometimes the law can be an ass and nothing can be achieved by means of suing one's way through the courts, but there are two cases reported today that suggest that sometimes at least the legal route just might be the more efficient way to achieve particular ethical or policy objectives.

The first case could best be described as: Whales: 1, US Navy: 0. Check it out here.
The second case I reported about on this blog. I learned today that Novartis lost its case in the Indian High Court.

Mind you, none of this shows that critical analysis and argument are not called for, but equally it seems fair to say that in some circumstances a good team of lawyers can replace a lot of academic papers and books and campaign officers, if one is concerned about achieving desireable outcomes at all.

Novartis versus the cancer patients of India

In our continuing coverage of pharmaceutical companies' misdeeds, for a change it isn't Pfizer that is on today's menu but Novartis.

By Rasha (Saudi Arabia)
Saturday, June 16th, 2007
Swiss “Novartis” is one of the largest pharmaceutical companies in the world. Novartis has launched two law suits against India’s government after the country refused to grant a patent for (Glivec) a new form of the original compound of an anti-cancer medicine. Novartis is challenging not just the Glivec decision, but also a section of India’s patent law designed to promote cheaper generic medicines for poor patients who cannot afford patented medicines.

The law allows India to refuse a patent for an existing medicine that has been slightly modified. In countries such as the US, companies have modified medicines then re-patented them to extend their monopoly and keep generic competition off the market. India’s law ensures that this practice – called “ever-greening” – would not block access to affordable generics.

India changed its Patents Act in early 2005 to meet its obligations as a member of the World Trade Organization, India adopted a new patent law that lets drug companies seek patents on medicines invented after 1995 or for new and more efficacious versions of older drugs. The government tried to ensure that medicines that were not innovative, were not granted patents. Novartis is pressuring India to eliminate a perfectly legal public health safeguard.

If Novartis succeeds, additional patents are likely to happen, resulting in further restrictions on the production of generic drugs in India and causing high prices for newer medicines. India’s generic medicine industry is often called “the pharmacy to the developing world” because it produces quality drugs at dramatically more affordable prices.
If Novartis succeeds, drug prices will rise, and people will suffer greatly,” said Vineeta Gupta of SHAII (Stop HIV/AIDS in India Initiative). “Novartis should be ashamed.”
Oxfam says that India’s law reflects an important public health safeguard that was agreed at the World Trade Organization. No country has challenged the legality of India’s law at the WTO.

Most AIDS treatment programmes throughout the world rely on generic antiretroviral (ARV) medicines made in India, including more than 80% of the 80,000 patients treated by Doctors Without Borders in more than 30 countries.
And 70% of the ARVs purchased by UNICEF, the International Dispensary Association, the UN Global Fund, and the Clinton Foundation to treat patients in 87 developing countries come from generic Indian sources as well.
Generic competition is what brought prices down for antiretroviral (ARV) medicines for people living with HIV/AIDS from a staggering $10,000 to $136 a year.

Novartis must drop its controversial court case against India which started in Jan 29th/2007, says international agency Oxfam.
If Novartis wins its case, a lot of patients in developing countries, especially those suffering from HIV/AIDS, who mainly rely on affordable drugs from India, would not have access anymore to drugs, It is unacceptable that commercial interests of a company comes before the general health’s interests and the right of states to protect and promote public health.

Arguements on this case have been heard and judgement is expected in the following weeks, if you care about medication reaching and saving HIV/AIDS patients check this site (you can add your name)