Crossing the Line

by Diana Jenkins

For those of us in Sydney and the Blue Mountains, May is one of the hottest months of the year, despite the rapidly plunging mercury. Yes, it’s Sydney Writers’ Festival time again, with the Varuna SWF program serving up an extraordinary array of Australian and international talent in Katoomba. Undoubtedly one of the Varuna SWF festival highlights is the 2017 Eric Dark Memorial Lecture, to be delivered at the Carrington Hotel by Wendy Rogers, Professor of Clinical Ethics at Macquarie University.

Wendy’s work exposing and lobbying against Chinese organ harvesting merges her academic interests with activism and a deeply personal ethical imperative that insists she not stand idly by. What she has to say about this humanitarian crisis shocks and dismays, but it undoubtedly galvanises too. Wendy’s articles on the subject are jaw-dropping stuff, and they’re a timely reminder that we must act to alter the course of those issues that keep us up at night.

There are so many things wrong with the way human beings treat each other and the world we live in that our collective misdeeds overwhelm any reasonable person’s attempts to reckon with them. It just keeps coming: the horror, the horror. Organ harvesting is, after all, a human story: the tale of what some people are capable of doing to some other people. All our stories fundamentally revolve around and return to this idea, because we’re so monstrously self-centred as a species, but I do think it’s desperately important that these stories continue to be told, over and over again. Stories of what human beings are capable of doing to each other are perhaps our very best hope for rewriting the ending.

I’m honoured to welcome Professor Rogers to the Alumni Interview Suite.

DJ: Wendy, how did practising medicine as a GP lead you to philosophy and in particular the field of bioethics?

WR: I had a bit of a love-hate relationship with general practice, so when I had my first child, I took the opportunity to go back to uni and take an Arts degree in English lit and philosophy. While doing philosophy, I realised that bioethics at that time only studied problems of high-tech and tertiary medicine, even though primary care and GP are very ethically challenging. So I decided to do my PhD on ethical issues in general practice.

DJ: What are we even talking about when we say ‘bioethics’?

WR: Broadly speaking, bioethics is the study of ethical issues arising from the life sciences. Most of my work has been in medical and research ethics — problems like over-diagnosis and [the] ethics of organ transplantation, as well as a lot of work on the ethics of different research methods and of surgery.

DJ: Your academic work and your activism are inextricably linked — could you tell us how you manage and indeed exploit that dual purpose?

WR: That's a tricky one. As a professor, I have quite a lot of credibility, so if I go to the media and say, "This is an ethical problem," I tend to be believed. So I can be a spokesperson for some issues, for example writing for The Conversation as well as for academic journals. In terms of managing things, it's hard to keep them apart. My activism on organ harvesting started with helping to organise a film screening, but since then I've gone on to write a couple of academic articles and letters and am just starting a research project on an aspect of the issue.

DJ: It was a bit of a loss of innocence reading two of your recent scholarly articles on the practice of organ procurement in China. Wow. How closely do you work with organisations like Human Rights Watch and other agencies dedicated to exposing these kinds of systemic human rights violations?

WR: The issue of organ harvesting in China is fairly unique, as it is only recently starting to gather international attention. It is very difficult for HR organisations to work in China, and there is such a cone of silence around organ harvesting, that mentioning it may jeopardise access on other issues. But Freedom Watch had a section on organ harvesting in their most recent report.

DJ: There’s an interesting semantic issue in the Chinese case that will intrigue writers, and that’s the potential double meaning of the term ‘executed prisoner’. Manipulating the law via the use of ambiguous language is not a new thing, it forms the bedrock of countless defence cases, but in terms of China’s organ procurement practices, how is this phrase used to expand the numbers of available organs?

WR: When the Chinese say "executed prisoner," we tend to think of a person who has been through the criminal justice system and been condemned to death, and this is what the Chinese government wants us to think. But many of the executed prisoners whose organs are taken are prisoners of conscience who have not been charged with a crime or tried; they are people who are unjustly imprisoned and then executed explicitly for their organs. But in that they are prisoners who are executed, they can be concealed by the term "executed prisoners".

DJ: How difficult is it extracting accurate information for your research and papers from a country like China and are there any unusual strategies you’ve developed over the years to get the accurate information you need?

WR: It is difficult to get any accurate data about transplants from China. I rely a lot on an independent investigator who speaks Mandarin and who finds and translates articles, and who is very generous sharing a lot of information.

DJ: I assume there’s big money in transplant tourism and organ harvesting, with international patients jetting in for booked surgeries and so forth. That must mean there’s potential for your making enemies of quite powerful people – how do you approach the politics of it all and have you ever been concerned for your personal safety?

WR: I've never been concerned for my personal safety, but I would not travel to China. The politics are very complex.

DJ: I remember reading Kazuo Ishiguro’s 2005 dystopian novel Never Let Me Go, which tells the story of a group of young people whose organs are progressively harvested over a number of years. It was horrible, but seemed reassuringly farfetched. The distance between that vision and the execution of prisoners of conscience in China for the express purpose of organ acquisition seems alarmingly narrow. Who are your favourite authors and how much of your research findings feel stranger than fiction?

WR: Oh, the list is long — my sister Jane Rogers of course (Jane’s latest novel is Conrad and Eleanor; her previous novel The Testament of Jessie Lamb won the Arthur C. Clarke Award). I like Ishiguro. Hilary Mantel. I tend to read mainly women writers – the Canadians – Atwood, Munro, Shields. I just read My Name is Lucy Barton by Elizabeth Strout and really loved that, also The Long View by Elizabeth Jane Howard.

I did have a situation last year that was so labyrinthine and complex that it seemed much stranger than fiction. Especially dealing with information from China: there's a lot of interpretation of what things mean (like an article initially being taken down by the Chinese internet censor, then reinstated) and supposition about the significance of events.

DJ: What’s the estimated scale of organ trafficking worldwide, if such a statistic even exists, and of that, what proportion comes from China? Are there any available statistics on the gender split and age range of the executed prisoners in particular?

WR: There is no reliable data on Chinese executed prisoners because the number is a state secret. Estimates by independent researchers are of 60,000-100,000 per year, but no gender breakdown. I don't have information on worldwide trafficking.

DJ: I found myself wondering if Chinese organ procurement cartels give themselves preferential treatment for organ transplants, and if Chinese politicians are on a VIP list for treatment as well. My more cynical side assumes they must be – do you have any credible reason to believe that’s happening?

WR: No research, but I'm sure that would be the case.

DJ: Why are the transplant numbers so big in China? Is it possible there’s a transplant trend?

WR: The (real) numbers are big compared with the rest of the world because of access to supply of organs from executed prisoners. Everywhere else in the world, supply is limited. If China had a functioning voluntary system with donation rates comparable to western countries, then the numbers would be big just because of China's size.

DJ: One of the ways you and others continue to highlight these practices is via professional sanctions against Chinese scientists and surgeons, refusing them admittance to international conferences, meetings and academic collaborations as well as refusing to publish their articles in scholarly journals. How effective are such measures given China has a long history of being closed off by choice?

WR: Chinese academics seek to engage with the West and seek recognition and credibility through publications and presentations in . Western journals and conferences. So it is potentially quite a powerful way of encouraging change. But it seems that many papers have been published using data from executed prisoners and that has not been picked up by the journals. For example, Liver International recently retracted a Chinese paper.

DJ: With that very high transplant rate in China (one surgical team performed 5 liver transplants in a single day and a total of 11 in one week in 2005), one could argue those surgeons acquire unusual expertise in the operating theatre – how much do you have to weigh up the undoubted value of what they know against the compromised ethical standard of how that knowledge was acquired?

WR: Of course, some of them are now the most expert in the world. It's the same question as what to do with the data from Nazi and Japanese WW2 research. For now, I think the research should not be published, until there has been some kind of judicial reckoning, and then I think it should be up to the victim communities to have a say in what happens to data.

DJ: In one very disturbing case you cite, a prominent Chinese specialist performed a risky, innovative surgery with two ‘spare’ livers at his disposal. The extra livers were delivered as back up should the procedure go awry, but it was a success, so were those livers disposed of or redirected for another patient’s benefit? And…well, there are a lot of questions here. Spare livers don’t exist, to the best of my knowledge.

WR: As far as we know, the livers went into the trash. You are correct, spare livers do not exist. Two prisoners died at the convenience of that surgeon.

DJ: It’s really breathtaking. What kind of accountability from China would satisfy the international medical community enough to allow China to re-join the table?

WR: I can't speak for the international medical community. End Organ Pillaging, the NGO I'm associated with, is seeking an end to forced organ harvesting from prisoners of conscience, justice for the victims/victims' families, and accountability from the perpetrators.

[My personal view] is that at a minimum, China needs an open, independently verifiable transplant register and organ tracing system to be a credible member of the international transplant community.

DJ: Wendy, you’re delivering the 2017 Dr Eric Dark Memorial Lecture in Katoomba as part of the Varuna Sydney Writers’ Festival program (CROSSING THE LINE: ACTIVISM AND ACADEMIC BIOETHICS, The Carrington Hotel, Monday 29 May, 6.00pm-7.00pm – bookings essential). You’ve been invited to speak for a number of reasons, one being that like you, Dr Dark combined his medical practice with his lifelong commitment to an ethical and democratic society. It’s a lofty enough ideal to do no harm, but do you think doctors have a special mandate to go beyond that and try to right the wrongs of others, or at least to call them out?

WR: I felt I had a duty to become involved in this particular issue because I have done a lot of academic work on organ donation ethics, so I was very well placed, with expertise in medicine, organ donation and medical ethics, to be a credible and hopefully effective activist. Also the nature and scale of the crimes in China were of such magnitude that it was impossible to walk away.

DJ: Your call for the independent scrutiny of Chinese practices by an appropriate international body, with the power to perform unscheduled visits and interviews with donor families, made me wonder who would get away with that. At present, is there any organisation worldwide that could command this kind of liberty and transparency while in China investigating its organ donation practices?

WR: Not really. The World Health Organisation (WHO) has done some inspections, but these were not unscheduled or extensive. The United Nations (UN) is sitting on a petition organised by Doctors Against Forced Organ Harvesting (DAFOH) with upwards of 1 or 2 million signatures and has made no formal response after more than 2 or 3 years.

DJ: You’re a Professor of Clinical Ethics at Macquarie University in Sydney, jointly appointed between the Philosophy Department and the Department of Clinical Medicine. Is this quite a new field, and do you expect it to grow in line with advances in medical technologies and the apparently insatiable human hunger for longevity?

WR: The field is already quite well established; all medical schools have to provide medical ethics teaching and usually have a dedicated person to do this. But technological advances often outstrip considered debate and judgement about their normative implications, leading to a continuing source of new topics to study.

DJ: Finally, the Varuna Sydney Writers’ Festival attracts writers and readers across every conceivable field of interest. Why do you think your lecture will appeal to festivalgoers and what’s at the heart of the message you wish to leave behind?

WR: I hope that I will be able to present my material in an interesting way that will engage attendees. There's certainly a gripping tale, if I can tell it well. The heart of my message is that the personal is the political: we can't practice our professions divorced from "the real world". If there are horrendous transplant abuses in China, I cannot ignore those on the grounds that I'm concerned only with the ethics of organ donation in Australia.

DJ: Gripping, disturbing, thought-provoking: it’s all there. I expect your audience will be very affected and challenged — exactly what one hopes for in the Eric Dark Memorial Lecture. Thanks so much, Wendy. I bet you’ll be able to hear a pin drop once the lecture begins. For anyone wishing to read more on the subject, please email me and I will forward the research papers Wendy shared.