A Review of Nuffield Council on Bioethics’ report on Genome Editing and Human Reproduction: Social and Ethical Issues [Part 2/2]
Amarpreet Kaur, February ‘19
The first part of this review is available here.
This second part of the review of the Council’s report on Genome Editing and Human Reproduction is focused on the methodology utilised for the report. As mentioned in part one of the review, this blog will examine the working group’s exploration and data collection for this report, particularly because the Council’s report offers recommendations at a national level.
The working group undertook a range of ‘evidence-gathering activities’ throughout 2017 to inform their deliberations on the ethical issues raised by genome editing and human reproduction (NCOB, 2019). These activities included commissioning a background paper on germline genome editing research and clinical applications in China, and commissioning a report on the regulation of genome editing and human reproduction under international law, EU law and comparative law (NCOB, 2019).
According to the Social Research Association ((SRA), 2002: 3), commissioned research is usually sought ‘to produce high quality, useful and cost-effective research by fair and accountable means’. However, commissioned research is usually also dependent on the commissioning body being satisfied with the research, thus the researcher may be biased by this factor so there is little/no financial deduction(s) made to their (final) payment (SRA, 2002: 47). I would be specifically interested to know how both pieces of research commissioned by the Council’s working group assisted their deliberations, and the details of the financial agreements for both pieces of research. To date, this information is absent from any of the working group’s publications.
Between March 2017 and July 2017, the working group reportedly conducted three fact-finding meetings with experts in reproductive genetics, genomics and bioethics (NCOB, 2018a: 164-165). The first fact-finding meeting consisted of six experts in reproductive genetics and was aimed at exploring recent developments and trends in reproductive technologies and identifying possible interactions with prospective genome editing applications (NCOB, 2018a: 164). In my opinion, the selection of the experts and purpose for this meeting is self-justified in relation to evidence-gathering for the report and the working group’s terms of reference.
The second meeting however, was with nine experts in genomics. Several of the experts who attended this meeting have less explicit connections to ‘genome editing and human reproduction’ (if any at all). Nonetheless, these experts were chosen to assist the working group to ‘explore how developments in genome sequencing and genomics research are likely to interact with prospective genome editing applications’ (NCOB, 2018a: 164). The necessity of this meeting in relation to the report is less tangible to me than the first meeting, but I am sure this meeting would have yielded interesting discussion among those in attendance all the same.
The third and final meeting was with eight experts in bioethics. The purpose of the meeting was to explore different arguments relating to the moral permissibility of genome editing (NCOB, 2018a: 165). I assume elements of discussion from this meeting were included in Chapter 3 of the working group’s report (the chapter on ethical considerations), however, minutes or summaries of all three meetings would possibly be a far richer read. This meeting was perhaps core to the working group’s deliberations, particularly because of the Council’s interests.
In addition to the three fact-finding meetings detailed above, the working group also benefited from notes which addressed issues relating to human reproduction, from two preceding fact-finding meetings conducted by the Council, during the first stage of their work on genome editing. Again, access to these notes, to increase the transparency of the working group’s deliberations, would be very insightful.
Next, between May 2017 and October 2017, the working group conducted four panel interviews (NCOB, 2019). Unlike the fact-finding meetings which are perhaps akin to focus groups, the panel interviews had a solo interviewee per interview. The working group has published little detail on these interviews, the purpose of these interviews, or the information gained from them. The working group also report conducting six research interviews between May 2017 and August 2017 (NCOB, 2018a: 166). The research interviews were with reproductive and disability right advocates, some of whom have known disabilities. The report states that the purpose of these interviews was ‘to explore views about the potential social implications of the use of genome editing from a range of perspective including those of people affected by genetic disease and disability, and reproductive and disability rights advocates’ (NCOB, 2018a: 166). The insights from these interviews could possibly be invaluable, however due to the lack of detail, this cannot be determined.
The working group also ran an open call for evidence on genome editing from 15th May 2017 to 14th July 2017 (NCOB, 2018a: 168). The call for evidence was a ‘refresh’ of the Council’s 2015-2016 open call. The refreshed call was aimed at gathering more in-depth information from individuals and organisations with an existing interest or knowledge about prospective applications of genome editing in relation to human reproduction (NCOB, 2019). The call was accompanied by a briefing document and 27 guide questions. The working group received fourteen responses, seven from individuals or groups of individuals and seven from organisations. With permission from respondents, several of these responses have been published online.
In parallel to the open call for evidence, the working group also conducted an online ‘public’ survey based on three potential genome editing scenarios (NCOB, 2019). Whilst the survey was dubbed a ‘public’ survey and was intended to gather a wide range of views from members of the public, there is little evidence to suggest the survey did reach the public. During the eight weeks that the survey was live for responses, the working group opted to promote the survey via the Council’s standard channels of social media, mailing lists, personal contacts, external organisations and ‘other networks’ (NCOB, 2017a: 2). Arguably, many of these chosen channels have little public outreach, and are more likely to have a captive audience of interested parties with research or professional interest in the Council’s or related bodies’ work. The working group would have perhaps benefited from strategizing their participation approach to a greater extent.
The survey received 320 responses in total, however, not all respondents answered all the questions presented to them. Furthermore, 11/15 multiple choice questions in the survey had leading options to choose from, i.e. options that were phrased to generate a particular answer – an answer which may not have been representative of the respondent’s own thoughts. The following screenshot is of question two from the working group’s survey, for an example.
The inclusion of an open-text box for respondents to write the considerations that informed their response at the end of most questions in the survey seems somewhat arbitrary when the multiple-choice selection was leading. The use of leading options for answers in the survey is surprising, particularly because 7/8 members of the working group involved in designing the survey are professors well acquainted with basic research practices (NCOB, 2018a: 170-171). In light of the working group opting to use leading answer options for the majority of questions in the survey, I would be reluctant to use any data from their survey.
Nonetheless, despite the wording of the questions and the answer options, there were several factors that the survey aimed to question which could have been insightful, such as various factors of disease and disability. I drew upon the strengths and weaknesses of the working group’s survey to inform the design and participation strategy of my own survey (for which I remain very grateful) titled ‘Understandings of Genetic Editing and its Potential Uses within Human Reproduction’. The survey’s weaknesses outlined above are unfortunate because the survey findings could have been very impactful and would have enabled the working group to meet their terms of reference to a greater extent. However, I am sure the working group would have still gained some insight from their survey findings, if not, the process of designing and conducting the survey itself. Having now read the findings report I can understand why there is little reference to the working group’s survey in their report on genome editing and human reproduction.
Having considered all the evidence-gathering activities / methodology utilised by the working group to assist the creation of their report, I can now address these in relation to the working group’s terms of reference, which were as follows.
1. To examine ethical questions relating to the attempted influence of inherited characteristics in humans, in the light of the likely impact of genome editing technologies.
2. To review relevant institutional, national and international policies and provisions, and to assess their suitability in the light of the ethical questions examined.
3. To report on these matters and to make recommendations relating to policy and practice
Undoubtedly, the first two terms of reference have definitely been fulfilled. However, to make recommendations relating to policy and practice, as per the third term of reference, I have to question if it is ethical to do so without sound public consultation. To report on ethical matters and questions surrounding genome editing and human reproduction with no representative data from the public or individuals who could be directly affected by policy and practice decisions (e.g. individuals affected by genetic disease), seems unjust. In my opinion, to make recommendations at a national level, surely the views of individuals who would be primarily affected by genome editing technologies and the wider public should be obtained first. To this end, I am forced to conclude that the third term of reference could not be met satisfactorily without the working group conducting further research and therefore the recommendations in the report are perhaps premature.
I respect that a draft version of the report was circulated to eleven external reviewers with relevant professional expertise or experience in relation to genome editing and human reproduction to provide feedback for the working group’s consideration (NCOB, 2018a: 167). Furthermore, despite my critical review of the report, the magnitude of time, effort and research extended by the working group to develop the report should not be forgotten. No research is without flaws but we learn from each other’s research (and reports) to assist the world of knowledge.
NCOB, (2017a). Genome Editing and Human Reproduction Public Survey. London. Nuffield Council on Bioethics.
NCOB, (2017b). Genome Editing Survey Preview. [online] Available from: http://nuffieldbioethics.org/wp-content/uploads/Genome-editing-survey-preview.pdf Accessed 5th February 2019 @ 17:53. Nuffield Council on Bioethics.
NCOB, (2018a). Genome Editing and Human Reproduction. London. Nuffield Council on Bioethics.
NCOB, (2018b). Terms of Reference. [online] Available from: http://nuffieldbioethics.org/project/genome-editing-human-reproduction/terms-reference Accessed 19th September 2018 @ 18:15. Nuffield Council on Bioethics.
NCOB, (2019). Evidence-gathering. [online] Available from: http://nuffieldbioethics.org/project/genome-editing-human-reproduction/evidence Accessed: 2nd February 2019.
SRA, (2002). Commissioning Social Research: A Good Practice Guide, Second Edition. London. Social Research Association.
 See NCOB, 2018b.
 The findings report to my survey, which reached the wider public in the United Kingdom (UK) and the findings of which are relatively generalisable to the UK population, will be ready by March 2019. The report to my survey will be available upon request from firstname.lastname@example.org.