Keywords: Ethical Review, International Guidelines, Gene editing technologies,
It has now been over six months since He Jiankuiand his team used the CRISPR/CAS9 gene editing technique to introduce a gene alteration in twin girls (STAT). The revelation that he had performed this audacious experiment shocked the world and left people asking how he had been permitted to do it. Dr He Jiankui is not a medical doctor but is qualified in biophysics and was one of the pioneers of the new gene editing technology in China having worked in the United States for five years where he undertook post-doctoral studies.
The report that accompanied the announcement of the birth of the twin girls outlined how He and his colleagues had sought out couples where the father was HIV-positive but the mother was not. The purpose of their work was to alter a gene known to confer resistance to HIV infection, CCR5, so that the children would be naturally resistant to possible infection. The public response worldwide was one of outrage and fierce opposition from all quarters. His fellow scientists and doctors denounced his actions as immoral and unethical and he was fired by the Southern University of Science and Technology in Shenzhen, China.
Chinese authorities immediately placed a prohibition on any such activities and research (human embryonic gene editing that leads to the birth of babies) and claims were made that he and his team had acted against the law. The People’s Republic of China does have guidelines that forbid any research that involves human reproductive cloning; however, they do permit therapeutic cloning using embryonic stem cells where the aim is to cure or prevent illness. This is similar to the United Kingdom and several other European countries, but this is not legal in Australia. The key question here is whether such research is restricted to generating embryo stem cell lines or whether it permits the creation of embryos that can be implanted and grown to a full-term delivery.
There remain many unanswered questions from this case. He claims that he had ethics approval but the responsible committee denies they had any involvement. Clearly the clinic that recruited the potential parents (several signed up) also knew of the work and endorsed it. All of those working on the project presumably knew what the aim of their work was and yet still conducted it willingly. It is also important to note here that in this highly controversial case the world does not have any independent confirmation that any gene editing actually happened or that the twin girls have the CCR5 alteration. However, prominent scientists who were present at the announcement appear to believe the claims and some of the details in the report itself appear to reflect the reality of his claim.
In response to international outrage, a group of prominent scientists have called for an international moratorium. This would be similar to the 1975 Asilomar conference on recombinant gene technology. In 2015 UNESCO called for a moratorium on genome editing of the human germline at least until the ‘safety and effectiveness of procedures remain unproven’. Both calls envision the possibility that prohibitions may be lifted if the evidence for safety and effectiveness can be met in contrast to those that wish for a permanent outright ban. The general prohibition on research involving human embryos, such as is the case in Australia, prevents anyone doing research that might demonstrate that such work is safe and effective though, effectively shutting the door. In the United States there is only a prohibition for federal funding of such research so private enterprise could easily step in. Moratoria are notoriously difficult to monitor or enforce and the lure of making money or gaining fame from the research may prove to be too powerful. He might reflect that he has achieved notoriety rather than fame as a hero but reports generally paint him as ambitious and naïve, conveniently ignoring the guidelines or ethical issues rather than being actually evil in intent. After all, the intention was to augment human capacity, even though that has led to claims of ‘taking a step down the road’ of human eugenics by prominent bioethicists such as Arthur Caplan.
One of the key messages coming out of the debate is that self-regulation by scientists remains open to abuse. On the other hand, scientists argue that attempts to limit their work with increased scrutiny may be disproportionate and have a negative effect on research that may ultimately lead to improvements in human health. This is the ‘rotten apple’ argument and to some extent it is fair to be sympathetic toward it as there are good examples of how increased regulation does not necessarily improve patient or community safety. However, there is more to this debate than just regulation of laboratory activities and the issues related to what it is to be human and the consequences of manipulation that extends into augmentation or spurious characteristic selection such as eye colour or enhanced sport performance are real.
The World Health Organisation (WHO) has called for international guidelines https://www.who.int/ethics/topics/human-genome-editing/en/to be developed and deployed by members states, forming a working party to develop these in December 2018. However, these would only be guidelines that would then have to be adopted by member countries. Importantly, the WHO panel does not envisage a permanent prohibition of embryo gene editing but stated in a media release that ‘The Committee will explore how best to promote transparent and trustworthy practices and how to ensure appropriate assessments are performed prior to any relevant work being undertaken.’ This clearly indicates that the intention is to regulate rather than prohibit future work in this area.
In many respects this is not a new ethical issue as the technology to alter the human genome has been around for many years, just not so cheap and potentially efficient. In addition, there are other applications of CRISPR that do not involve use in embryos or require a hereditary component. Somatic cell treatments for diseases such as muscular dystrophy and Beta Thalassemia have the potential to alleviate human suffering and are distinct from embryonic gene editing. It is probable that restrictions on these activities could also occur unless legislation and guidelines are careful to avoid capturing areas that are unintended. One could argue that these treatments which are aimed at people after birth should be treated in the same way as other biological therapies.
It is likely that a general prohibition of embryo manipulation for reproductive cloning will remain in most countries and some may now move to more specifically outlaw therapeutic cloning using gene editing. Many jurisdictions have looked at guidelines that prohibit this but there is little harmonization of these thus far. There is a great deal of work underway in many countries now to examine the issues and to establish appropriate pathways for regulation. AHRECS will monitor these activities and report on them as they arise.
Have you ever needed to find a history of human research ethics, whether for personal study or for use in professional development work with human research ethics committee members or researchers?
Motivated perhaps by George Santayana’s often paraphrased ‘those who cannot remember the past are condemned to repeat it’, we at AHRECS have often needed to refer to the history of the emergence of ethics in human research but have found repeatedly that the readily available histories focus on international, European and (predominantly) United States events. Conventionally, they begin in the 18th century and recount a litany of unethical research and, apparently consequential, increases in regulation, whether in the form of revised and strengthened guidelines, additional review processes or even legislation.
A typical pattern is to begin with Edward Jenner’s smallpox work in the late 18th century, Claude Bernard’s early 19th-century cautions about avoiding harm, Walter Reid’s yellow fever study in Havana in the early 1900s, the start of the Tuskegee syphilis study in the early 1930s, the Nuremberg experiments and the Code (and the mere lip-service paid to it in the US Army’s atomic energy studies in the 1950s) and, sometimes, the Japanese Unit 731 biological and chemical warfare studies in the 1940s. Then, in the 1960s, Henry Beecher’s New England Journal of Medicine article, Maurice Papworth’s human guinea pigs article and book, what Martin Tolich referred to as the ‘unholy trinity’ of Stanley Milgram’s authority study, Laud Humphrey’s tearoom trade study and Philip Zimbardo’s Stanford prison experiment, and the Declaration of Helsinki. Then the 1970s brings disclosure and cessation of the Tuskegee syphilis study, the US National Research Act, the first common rule regulations, the President’s Commission and the Belmont Report. Sentinel events in the 1990s include the Pfizer Trovan study in Nigeria, the clinical trial deaths of Jesse Gelsinger and, since 2000, the death of Ellen Roche, the Northwick Park TGN 1412 study and the disclosure of the Guatemalan sexually transmitted disease studies, and controversy over Napoleon Chagnon’s Amazon bioprospecting and the US military’s Human Terrain System. There are of course other US and international events that could be added, but, in our experience the ones mentioned tend to recur most.
There are a number of difficulties with this ‘schooled by scandal’ history. First, the implicit (and simplistic) assumption of causality between examples of unethical (as seen with the benefit of hindsight) research and the subsequent tightening of regulations, guidelines or standards. Second, the unrepresentative importance accorded to the “scandals” can conceal the fact that most human research at the time was ethically acceptable. Nonetheless, we accept that the so-called scandals are important at least in the fact that they reveal points of time at which the ethical and social acceptability of prevailing practices in human research was being questioned from new perspectives whose sources are historically and socially complex. Third, the assumption that regulations have evolved and that all changes in regulation have benefited both research and research participants. Finally, the most important difficulty is that the history is simply not representative of our part of the world.
Australia has its own story to tell. It is likely that this story has been influenced at identifiable points by events in other parts of the world but it is equally important to recognise that those influences find an Australian expression. We at AHRECS think that we do need to know – and tell – our own story.
An Australian account could include
Date
Event
Source Material/urls
1920s and 1930s
early physiological research conducted in South Australia with Aboriginal men
1930s to the 1950s
vaccine studies on children in orphanages in Queensland and Victoria
1950s to the 1970s
secret strontium 90 pathology studies of bones
1950s
atomic energy experiments at Maralinga
1950s
early confrontation between Aboriginal mission administrators and researchers at Haast’s Bluff
1966
the first statement on human experimentation from the NHMRC (on which the influence of the 1964 Declaration of Helsinki is likely)
1970s
repetition of Stanley Milgram’s authority study at Latrobe University
1976 to 1999
ongoing revision of and additions to the statement on human experimentation
1986
the confrontational conference on Aboriginal and Torres Strait Islander health research in Alice Springs
1991
NHMRC Interim guidelines on Aboriginal and Torres Strait Islander health research
1987
development by the Australian Research Council of a discussion paper on human research ethics
1992
radical revision of ethical review and approval of clinical trials
1994 to 1996
ministerial review of human research ethics system
1997-99
development the first National Statement, including joint working party of ARC, UA & scholarly academies
2002-03
guidelines on Aboriginal and Torres Strait Islander research from the Australian Institute of Aboriginal and Torres Strait Islander Studies in and from the NHMRC
2002
defamation litigation about a Sydney doctor’s clinical trial approval and conduct practices
2006
public disclosure of the Latrobe University lifestyle study
2006
development of a national approach to shared ethical review
2007
revision of the National Statement
2007 to date
rolling revision of the National Statement
2007
public controversy about a study entitled ‘laughing at disabled’
2013
the Brisbane bus driver racial discrimination study
Accordingly, there is, in our view sufficient material from Australia to constitute a local, well documented story that is as valuable for study and professional development purposes as any of the conventional international and American accounts.
However, we are aware that stories of this kind are rarely complete. Accordingly, with this article, we are commencing the Research Ethics in Australia: A Story Project as a process of developing a more comprehensive Australian account which we propose to make available to AHRECS subscribers in formats that can be readily deployed for presentations or study resources.
A next step in that process is to invite our readers to add events that will fill out that history. Please send us at australianstoryproject@ahrecs.com any publicly available resources, documented anecdotes or other material that can be used to fill out the emerging story. The tabular format in which we have listed Australian events would be a suitable form in which to do this, accordingly please provide:
Dates
A description of the event/episode
Sources, references, urls,
Any multimedia material (images, video or audio files…) that might be used for teaching or presentations
First-hand accounts if you were part of the story and are free to share that account#.
# If you are free, legally and ethically, to do so, let us know if you have any personal accounts of any item. Don’t send us the account yet, we’ll seek ethics approval before asking you about your experience.
We would especially welcome accounts of the achievements of ethical human research in Australia. This could address the second difficulty, referred to above, with typical histories and inform a balanced and fairer Australian story of human research ethics
A final version will be in the form of a resource, suitable for presentation, supported with links to the sources of the events and accompanied by notes and advice on its use. Consistent with our mission, we firmly encourage the use of these past events in a constructive manner – how knowledge and understanding of them can inform better design, review and conduct of human research.
As you will be aware, we are delighted to have New Zealand colleagues among our consultants and know that that country has its own human research ethics story. Indeed, our colleagues, Martin Tolich and Barry Smith, have started telling the history of New Zealand research ethics. We are interested in developing a parallel New Zealand account and will invite contributions to this as well later on.
Our proposed final resource will include both narrative and presentation formats that embed links to source materials about events, procedures or documents. We will offer guidance about using the resource constructively, consistent with AHRECS’ mission, so that the underlying message is how to design, review and conduct human research well.
We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.
Anna Olsen, Research School of Population Health, ANU Julie Mooney-Somers, Centre for Values, Ethics and the Law in Medicine, University of Sydney *Neither of us are lawyers and, as such, our interpretations are as social scientists and HREC members. Interested lawyers and legal scholars are encouraged to contribute!
Researchers’ promises of confidentiality are often easily and genuinely made. However, our experience in research ethics review (Julie through an NGO-run ethics review committee; Anna through formally constituted university and hospital human research ethics committees), in qualitative research and in teaching qualitative research ethics has led us to think about the limits of these promises.
Australian researchers generally rely on the National Statement (National Health and Medical Research Council, 2015) and Human Research Ethics Committees (HRECs) for guidance around ethical and legal conduct in research. For example, Chapter 4.6 in the National Statement notes that researchers may discover illegal activity and guides researchers and HRECs to consider what researchers might be obliged to disclose in a legal situation and how to best protect (and inform) participants of this threat to confidentiality.
The National Statement is currently under revision (National Health and Medical Research Council, 2016) and the review submitted for public consultation in late-2016 contains a proposal to include additional information on “Disclosure to third parties of findings or results” in Section 3 of the National Statement. Here the NHMRC explicitly state that: “There can be situations where researchers have a legal, contractual or professional obligation to divulge findings or results to third parties”. That is, researchers should concern themselves not only with the legal implications of revealing potential illegal activity, but any instance in which they may be asked to break participant confidentiality.
The recent review of the National Statement extends the NHMRC recommendations around potential data disclosure in a number of ways: it makes much more explicit that researchers (as opposed to HRECs or institutions) are responsible for understanding the risks to patient confidentiality: “researchers should be aware of situations where a court, law enforcement agency or regulator may seek to compel the release of findings or results”. Researchers are expected to anticipate legal risks to participant confidentiality by: identifying “(a) whether, to whom and under what circumstances the findings or results will be disclosed; (b) whether potential participants will be forewarned that there may be such a disclosure; (c) the risks associated with such a disclosure and how they will be managed; and (d) the rationale for communicating and/or withholding the findings or results and the relative benefits and/or risks to participants of disclosure/non-disclosure”. And, researchers should advise participants on legal risks to confidentiality and how they will be handled: “(a) have a strategy in place to address this possibility; (b) advise participants of the potential for this to occur; and (c) advise participants as to how the situation will be managed”.
For many researchers in health, legal risks are a very vague reality and legal intervention a remote threat. They may feel confident that their research does not and will not uncover illegal activity, or that their data would simply be irrelevant to a legal case. Or they may feel confident that they have taken sufficient steps to protect their participants’ confidentiality by following guidelines; researchers working in illicit drug use, for example.
Many Australian HRECs articulate the NHMRC guidelines on legal risks of disclosure to third parties by requiring that researchers inform participants that any data collected during research will kept confidential, “except as required by law”. In keeping with the ethical concept of informed consent, participants are thereby warned that researchers are not able to unconditionally offer confidentially. It has become clear to us that the intention of this phrase, to flag the legal limits of confidentiality, is not well understood by researchers (Olsen & Mooney-Somers, 2014).
The National Statement details some aspects of human research that is subject to specific statutory regulation however stresses that compliance with legal obligations is not within the scope of the National Statement: “It is the responsibility of institutions and researchers to be aware of both general and specific legal requirements, wherever relevant”. Moreover, in the document we are directed that it is not the role of a HREC to provide legal advice. It is relatively rare for Australian HRECs to provide explicit guidance on the relevant legal obligations for researchers, including: how they differ across jurisdictions; what protective strategies researchers could employ to better protect patient confidentiality; or how to best inform participants about the risks of legal action (Some useful HREC-produced resources are Alfred Hospital Ethics Committee, 2010; QUT Office of Research Ethics and Integrity, 2016) Criminology scholars have (unsurprisingly) considered these issues in their own field (Chalmers & Israel. 2005; Israel, 2004; Israel & Gelsthorpe, 2017; Palys & Lowman, 2014).
We believe there are real risks to participants, researchers and research institutions.
Recent international cases of research dealing with illegal activity becoming subject to legal action include The Belfast Project/The Boston Tapes (BBC News, 2014; Emmerich, 2016; Israel, 2014) and Bradley Garrett’s ethnographic work with urban explorers (Fish, 2014; Times Higher Education, 2014) (See also Israel & Gelsthorpe, 2017). On the whole, legal action was anticipatable in these cases as they involved illicit activities and the legal action was driven by law enforcement interest. In some instances, researchers took extensive steps to protect participant confidentiality. In other cases the promise of absolute confidentiality seems a little naïve (and in our opinion, perhaps negligent).
Perhaps of more concern are cases in which legal action was instigated by interested others, not law enforcement. Of particular interest to us are recent cases of tobacco companies using Freedom of Information laws in Australia to obtain research data from Cancer Council Victoria on young people’s attitudes to and use of tobacco, and an earlier attempt to seek data on adults from Cancer Council NSW (McKenzie & Baker, 2015; Schetzer & Medew, 2015). As these cases do not involve illegal activity, it is much less likely that researchers could have anticipated the specific legal actions that undermined participant confidentiality. (The tobacco industry has taken these actions in other countries (Hastings, 2015; McMurtrie, 2002)).
Our point here is that the promise of confidentiality should never be casually made. Researchers have an ethical obligation to think through what “except as required by law” may mean for each particular research project. Although it has been argued elsewhere that as professionals, researchers should be provided the same participant confidentiality rights as doctors and lawyers (Emmerich, 2016), the current state of affairs is that research data is not (necessarily) safe from legal, contractual or professional obligation to divulge findings or results to third parties.
Chalmers, R., & Israel, M. (2005). Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Retrieved from http://crg.aic.gov.au/reports/200304-09.pdf
Israel, M. (2004). Strictly confidential? Integrity and the disclosure of criminological and socio-legal research. British Journal of Criminology, 44(5), 715-740.
Israel, M., & Gelsthorpe, L. (2017). Ethics in Criminological Research: A Powerful Force, or a Force for the Powerful? . In M. Cowburn, L. Gelsthorpe, & A. Wahidin (Eds.), Research Ethics in Criminology and Criminal Justice: Politics, Dilemmas, Issues and Solutions. London: Routledge.
Olsen, A., & Mooney-Somers, J. (2014). Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs. Drug Alcohol Rev, 33(6), 637-642. doi:10.1111/dar.12140
Palys, T., & Lowman, J. (2014). Protecting research confidentiality: What happens when law and ethics collide. Toronto: Lorimer.
Anna Olsen is a Senior Lecturer at the Research School of Population Health, Australian National University. She leads a number of qualitative and mixed methods public health research projects, teaches qualitative research methods and supervises post-graduate students. Dr Olsen is an experienced member of formally constituted university and hospital human research ethics committees. https://researchers.anu.edu.au/researchers/olsen-phd-am
Julie Mooney-Somers is a Senior Lecturer in Qualitative Research in the Centre for Values, Ethics and the Law in Medicine, University of Sydney. She is the director of the Masters of Qualitative Health Research at the University of Sydney. An experienced qualitative researcher, teacher and supervisor, she has taught qualitative research ethics and sat on a NGO-run ethics review committee for six years. http://sydney.edu.au/medicine/people/academics/profiles/julie.mooneysomers.php and http://www.juliemooneysomers.com
Mike Adorjan and Rose Ricciardelli’s edited collection, Engaging with Ethics in International Criminological Research, was recently published by Routledge. Of course, the book examines the likely suspects – ethical practices in relation to studies of policing, imprisonment and vulnerable populations. However, there are more unusual pieces on illuminating the Dark Net, carceral tours, and working in Hong Kong and China. My own contribution (Israel, 2016) examined the sad history of abuse of consent in research involving prisoners and prisons in the United States. It is an account of the exploitation of prisoners and a failure of criminologists to have any impact on the regulation and review of prison-based research.
Consent procedures have been created by research ethics regulators to protect research participants from abuse. In the United States, prisoners have been particularly vulnerable to the exploitative practices of researchers. However, contemporary consent procedures also stop researchers from uncovering institutional practices that exploit non-autonomous individuals. In doing so, research ethics regulation forms part of a broader strategy of self-protection established by public and private correctional services. Some scholars outside the United States have used covert research to evade prison protectionism. However, few have sought to link criminology’s understanding of state and state-corporate violence to the abuse of prisoners by researchers or extend their critique of protectionism to the work of research ethics regulators… I explore how requirements to obtain consent have been systematically evaded within prison-based research in the United States to the detriment of prisoners, but also how responses to scandal have led to the overprotection of institutions at the expense of prisoners’ ability to exercise autonomy, access justice, and benefit from the research process. Sadly, this chapter also demonstrates the apparent irrelevance of criminologists to the reform of regulation of research ethics in American prisons.
References
Israel, M (2016) A Short History of Coercive Practices: the Abuse of Consent in Research involving Prisoners and Prisons in the United States, in Adorjan, M and Ricciardelli, R (eds) Engaging with Ethics in International Criminological Research. London: Routledge. pp69-86. https://www.routledge.com/products/9781138938403
Contributor Mark Israel is a senior consultant with AHRECS, adjunct professor of law and criminology at Flinders University and a visiting academic at The University of Western Australia.
The senior consultants started AHRECS in 2007. We were looking for a way of responding to requests for advice on research ethics and integrity from the government, health and education sectors read more...
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