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.
Many commentators on research ethics have been based in the Global North and, when we find research ethics regulations that look very much like our own, we tend to make assumptions about the ways in which these patterns of regulation have unfolded. Apart from being disrespectful to local histories, insensitive to difference and intellectually lazy, failure to engage with the rich history of regulatory practices in different jurisdictions makes it hard for research ethicists to learn from others. That is hardly a position with which most people working in the field of research ethics would want to be associated.
In earlier editions of Research Ethics Monthly, guest posts from the Philippines have introduced developments in regulation there (Miguel, 2018). In this article, we briefly trace the growth of regulation in Taiwan. It is based on an article recently published in Developing World Bioethics (Gan and Israel, 2019). The pattern of research ethics in Taiwan reflects three distinct but interacting processes.
Transnational Policy Migration Taiwan transitioned from an authoritarian regime towards democracy through the legalization of opposition parties in 1986 and the end of martial law in 1987. Legislative initiatives to regulate research ethics need to be understood within larger national moves towards good regulatory practice, economic growth and competitiveness and globalization on the one hand, and democratization, Taiwanese nationalism, recognition of multiculturalism and Indigenous rights on the other. Given their country’s political, economic and educational ties to the United States, it is not a surprise that Taiwanese regulators looked to that country for legislative models.
Partly in response to a series of biomedical scandals, in 2011 the Taiwan legislature passed the Human Subjects Research Act (HSRA). Before the HSRA came into effect, ethics review was only required by law for clinical trial and human biobank research. The main legislative purpose of the HSRA was to regulate biomedical, healthcare, and behavioural research involving human participants no matter where the work was to be conducted, with whom the principal investigator was affiliated, or which government department funded the research.
Interdisciplinary Policy Transfer A series of administrative decisions championed by some social scientists, implemented by professionals with experience with health research ethics committees and reinforced by an oversight regime aligned with the biomedical sciences facilitated the extension of a particular form of research ethics regulation from biomedical sciences to other disciplines.
Until the HSRA came into effect in 2011, social scientists were only affected by the regulation of biomedical research ethics if they were funded by particular government departments or conducted research in or were employed by hospitals. Despite the stated purpose of the Act, HSRA changed that. Furthermore, there is evidence that both the legislature and the Department of Health made efforts to avoid extending the ambit of the HSRA. Ultimately, they failed. In time, a range of processes extended the regulation well beyond health sciences.
The first extension came as a result of a change in administrative rules by a government department responsible for funding social research that had already been developing initiatives around research ethics. The National Science Council4 attempted to create research ethics review processes more suitable for social research than those adopted in medical institutions. However, once the HSRA had passed, each time an initiative strayed from the requirements of HSRA the weight of the legislation and its accompanying bureaucracy pulled social science review into line with biomedical standards. This intensification of scrutiny on social research was not imposed by biomedical organisations but by senior social scientists and legal scholars. These advocates included some who had been socialized into biomedical research ethics practices and had built up professional expertise in that area – either because they had undertaken their postgraduate work in countries like the United States where research ethics review had already been extended to the social sciences or because they had participated in health institutional review boards.
University compliance with the HSRA has been enforced by the Ministry of Education (MOE). MOE took the conservative path of adopting the oversight regulations that had already been operating for ten years at the Department of Health. MOE also invited biomedical researchers with experience of the processes of the Department of Health to support MOE’s inspection role. In turn, most universities had neither the time nor the resources to build up discipline-specific responses. Rather than hiring people with expertise in social research ethics, they appointed as committee chairs or administrative directors those who had already worked on or for biomedical research ethics committees. Application forms, standard operating procedures and resources were often generated quickly by making only minor modifications to existing biomedical resources.
The threat of government sanctions and the associated reputational damage encouraged research institutions and their ethics committees to take risk-averse positions. Some universities required all research involving human participants to follow the HSRA irrespective of methodology or discipline. In these ways, biomedical approaches to research ethics were generalized across all disciplines.
Decolonization The expansion of the universalist model of research ethics has not been inexorable and was disrupted when power relations between the state and Taiwan’s Indigenous peoples changed. This moment reflected larger scale processes of democratization and Taiwanization, processes that were sometimes antagonistic towards decolonization and the struggle for Indigenous self-determination. It was also made possible by a period when Indigenous legislators held the balance of power in the national legislature and used it to formalize communal rights, rights that might be asserted when negotiating with external researchers. As a result, and partly in reaction to three biomedical scandals concerning Indigenous peoples, Article 15 of the HSRA mandated that researchers who conducted biomedical and healthcare research involving Indigenous peoples not only had to seek individual informed consent but also had to seek consent from their communities in relation to their participation, publication of research results, and commercial benefits.
The various regulations relating to group consent aimed at granting greater liberty to Indigenous communities and tribes, ensuring that conversations occurred between equals and that benefits were shared. Given the history of exploitation of Indigenous peoples in Taiwan, the prospect of strengthening the hand of Indigenous communities in negotiating with researchers is to be welcomed and could be aligned with the current government’s ongoing reconciliation efforts.
Comparative Research Ethics Expansion of research ethics regulation from a biomedical legislative base and the existence of biomedical scandals prompting further regulatory intervention will not surprise readers in North America or Australasia, nor will the failure to attend specifically to the needs of social researchers. However, some features of the Taiwan experience are unusual. The role of some social scientists in advocating for the regulations concerning research ethics review to be applied to social research through administrative processes is surprising given the resistance to such moves by most social scientists across the globe. Again, the constitutional position and the slowly unfolding political power of Indigenous people in Taiwan might afford them more say in how they are affected by research than might be the case in some other ‘settler nations’.
Acknowledgements This article appears in Research Ethics Monthly with the agreement of Wiley and Sons, publishers of Developing World Bioethics.
Gan, Z-R. and Israel, M. (2019) Transnational Policy Migration, Interdisciplinary Policy Transfer and Decolonization: Tracing the Patterns of Research Ethics Regulation in Taiwan. Developing World Bioethics. DOI: 10.1111/dewb.12224
1 Member, Human Research Ethics Committee; Assistant Research Fellow, Research Center for Humanities and Social Sciences; Adjunct Assistant Professor, Center for General Education, National Cheng Kung University, Taiwan. ganrrec@mail.ncku.edu.tw
2 Senior Consultant, Australasian Human Research Ethics Consultancy Services. mark.israel@ahrecs.com
3 The Department of Health of the Executive Yuan, the top-level administrative arm of government, was renamed as the Ministry of Health and Welfare in 2013.
4 The Department of Health of the Executive Yuan, the top-level administrative arm of government, was renamed as the Ministry of Health and Welfare in 2013.
Mark Israel’s article in Research Ethics Monthly on ‘Self-plagiarism?’ has been receiving a little interest outside Australia and New Zealand. It was reposted by the LSE Impact of Social Sciences Blog, and listed by Retraction Watch. Given that it offered guidance on the ethics of republishing in another language, it was nice to hear that the five pieces of advice had been translated into Mandarin by Zheng-Rong Gan for use at National Cheng Kung University in Taiwan (reproduced below with her permission).
Assess whether your reasons are ethically defensible; 評估這麼做的理由在倫理上是否站得住腳
Seek the agreement of those involved in your first publication – co-authors, editors and publishers; in some cases, publishers will want a specific form of acknowledgement; 尋求出現在第一次出版相關文章/文字者的同意，其中可能包含共同作者、編輯、出版商（有時會要求有特定的認可方式）
Seek the agreement of those involved in the new publication that will be reproducing material – any co-authors, editors and publishers; 尋求此次新出版相關文章/文字者的同意，其中可能包含共同作者、編輯、出版商等
Clearly acknowledge in the new publication that you are drawing on the earlier publication and do so with the agreement of the various parties, 在新出版品中清楚註記出處，且註記方式能被原出版者及新出版者所認可
Where it would be misleading not to do so, also note the relationship between publications in your CV and any job or grant applications在您的學術履歷、研究經費或升等之類文件，務必清楚註記這些前後出版品的關係，以避免被誤解或重複計算發表篇數等
There were a few responses to the LSE Blog. One respondent pointed out the concept of ‘self-plagiarism’ is self-contradictory as one cannot plagiarise one’s own work. Mark Israel agrees with this respondent, notes that the term is in wide use and recognises that its use should be challenged. The same respondent pointed to the Ingelfinger Rule which has been adopted by journals who refuse to publish articles that have already been published elsewhere. The Rule has been modified and challenged over time, most recently in relation to the use of preprint servers (see Resnik, 2018).
Evaluation research is used to assess the value of such things as services, interventions, and policies. The term ‘evaluation research’ makes it seem homogeneous but in fact evaluation research draws on a range of theoretical perspectives and a wide variety of quantitative and qualitative methods. However, there are three things evaluation research usually does that set it apart from other kinds of research. It:
asks what is working well and where and how improvements could be made;
Systematic inquiry: evaluators conduct data-based inquiries that are thorough, methodical, and contextually relevant.
Competence: evaluators provide skilled professional services to stakeholders.
Integrity: evaluators behave with honesty and transparency in order to ensure the integrity of the evaluation.
Respect for people: evaluators honour the dignity, well-being, and self-worth of individuals and acknowledge the influence of culture within and across groups.
Common good and equity: evaluators strive to contribute to the common good and advancement of an equitable and just society.
The question of how research ethics review processes should engage with evaluation research has not yet been definitively decided in many research institutions in Australia and New Zealand. Helen Kara’s article alerts us to the degree to which evaluation researchers encounters novel ethical issues. We shall explore some of the possible institutional approaches in a forthcoming Patreon resource.
This is unusual in being thorough – there is much more explanation in the document – and up to date. The Australasian Evaluation Society (AES) has Guidelines for the Ethical Conduct of Evaluations which were last revised in 2013. This is a much more discursive document – 13 pages to the AEA’s four – which offers guidance to evaluation commissioners as well as evaluation researchers. The AES guidelines also refer to and include Indigenous ethical principles and priorities. In particular, reciprocity is highlighted as a specific principle to be followed. This is another difference from the AEA document in which Indigenous evaluation and evaluators are not mentioned. .
The United Nations Evaluation Group also specifies evaluation principles in its ethical guidelines (2008) but they are 10 years older than the AEA’s. Beyond these, there are few codes of ethics, or equivalent, readily available from national and international evaluation bodies. Also, evaluation research rarely comes within the purview of human research ethics committees unless it’s being conducted within a university or a health service. And books on evaluation research rarely mention ethics. .
Recent research has shown that a proportion of evaluation researchers will assert that ethics does not apply to evaluation and that they have never encountered ethical difficulties in their work (Morris, 2015, p.32; Williams, 2016, p.545). This seems very odd to me, as I have been doing evaluation research for the last 20 years and I have encountered ethical difficulties in every project. It also seems worrying as I wonder whether the next generation of evaluation researchers are learning to believe that they do not need to think about ethics. .
In my recent book, Research Ethics in the Real World (2018), I demonstrated that ethical issues exist at all stages of the research process, from the initial idea for a research question up to and including aftercare. This applies to evaluation research just as much as it does to any other kind of research. I also demonstrated that there are some ethical considerations at the macro level for evaluation research, such as funding, stakeholder involvement, and publishing. .
Well-funded organisations or projects can allocate money for evaluation; poorly-funded ones cannot. This means that evaluation research is routinely done where funding is available rather than where evaluation is most needed. In the United Kingdom, where I am based, we have been undergoing an ideological programme of austerity involving massive cuts to public services over the last nine years. This has come from successive governments that have also prioritised evaluation research, funding expensive national ‘What Works’ centres on themes such as ageing, health, and childhood, right through the austerity years. Yet to the best of my knowledge there has been no evaluation of the impact of any service closure. This seems short-sighted at best – though it does illustrate my point that evaluation happens where money is being spent. Also, an explicit purpose of evaluation research is often to provide evidence to use in future funding negotiations, which means that results are effectively expected to be positive. This means that pressures associated with funding can introduce bias into evaluation research right from the start. Combine this with an evaluator who needs to be paid for their work in order to pay their own bills, and you have a situation that is well on its way to being a money-fuelled toxic mess. .
Involving stakeholders is a key principle of evaluation research. The AEA define ‘stakeholders’ as ‘individuals, groups, or organizations served by, or with a legitimate interest in, an evaluation including those who might be affected by an evaluation’ and suggest that evaluators should communicate with stakeholders about all aspects of the evaluation (2018). Again, here, the use of a single word implies homogeneity when in fact evaluation stakeholders may range from Government ministers to some of the most marginalised people in society. This can make involving them difficult: some will be too busy to be involved, some will be impossible to find, and some will not want to be involved. Which leaves evaluators caught between an impractical principle and an unprincipled practice. There is some good practice in stakeholder involvement (Cartland, Ruch-Ross and Mason, 2012:171-177), but there is also a great deal of tokenism which is not ethical (Kara, 2018:63). Also, even when all groups of stakeholders are effectively engaged, this can bring new ethical problems. For example, their values and interests may be in conflict which can be challenging to manage, particularly alongside the inevitable power imbalances. Even if stakeholders work well together such that power imbalances are reduced within the evaluation, it is unlikely those reductions will carry over into the wider world. .
Commissioners of evaluation are reluctant to publish reports unless they are overwhelmingly positive. I had an example of this some years ago when I evaluated an innovative pilot project tackling substance misuse. From the start my client said they were keen to publish the evaluation report. I worked with stakeholders to collect and analyse my data and made around 10 recommendations, all but one of which said words to the effect of ‘good job, carry on’. Just one recommendation offered constructive criticism of one aspect of the project and made suggestions for improvement. My client asked me to remove that recommendation; I thought about it carefully but in the end refused because it was fully supported by the evaluation data. We had two more meetings about it and in the end, my client decided that they would not publish the report. This was unfortunate because others could have learned from the evaluation findings and methods, and because failure to publish increases the risk of work being duplicated which results in public funds being wasted. Sadly, as a commissioned researcher, I had signed away my intellectual property so it was out of my hands. Everyone involved in evaluation research can tell these kinds of tales. However, it is too simplistic to suggest that publication should always be a requirement. In some cases, the publication could be harmful, such as when a critical evaluation might lead to the economy of service closure, to the detriment of service users and staff, rather than to more resource-intensive improvements in policy and practice. But overall, unless there is a good reason to withhold a report, the publication is the ethical route. .
As the AEA principles suggest, evaluation researchers are in a good position to help increase social justice by influencing evaluation stakeholders to become more ethical. I would argue that there are several compelling reasons, outlined above, why all evaluation researchers should learn to think and act ethically. .
References
American Evaluation Association (2018) Guiding Principles. Washington, DC: American Evaluation Association.
Australasian Evaluation Society (2013) Guidelines for the Ethical Conduct of Evaluations. www.aes.asn.au
Cartland, J., Ruch-Ross, H. and Mason, M. (2012) Engaging community researchers in evaluation: looking at the experiences of community partners in school-based projects in the US. In Goodson, L. and Phillimore, J. (eds) Community Research for Participation: From Theory to Method, pp 169-184. Bristol, UK: Policy Press.
Kara, H. (2018) Research Ethics in the Real World: Euro-Western and Indigenous Perspectives. Bristol, UK: Policy Press.
Morris, M. (2015) Research on evaluation ethics: reflections and an agenda. In Brandon, P. (ed) Research on evaluation: new directions for evaluation, 31–42. Hoboken, NJ: Wiley.
Williams, L. (2016) Ethics in international development evaluation and research: what is the problem, why does it matter and what can we do about it? Journal of Development Effectiveness 8(4) 535–52. DOI: 10.1080/19439342.2016.1244700. .
Recommended reading
Morris, M. (ed) (2008) Evaluation Ethics for Best Practice: Cases and Commentaries. New York, NY: The Guilford Press.
Donaldson, S. and Picciotto, R. (eds) (2016) Evaluation for an Equitable Society. Charlotte, NC: Information Age Publishing, Inc.
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