Beyond Research Ethics: Dialogues In Neuro-ICT Research
COREMetadata, citation and similar papers at core.ac.ukProvided by De Montfort University Open Research ArchiveREVIEWpublished: 29 March 2019doi: 10.3389/fnhum.2019.00105Beyond Research Ethics: Dialoguesin Neuro-ICT ResearchBernd Carsten Stahl 1 *, Simisola Akintoye 2 , B. Tyr Fothergill 1 , Manuel Guerrero 3,4,5 ,Will Knight 1 and Inga Ulnicane 11Centre for Computing and Social Responsibility, De Montfort University, Leicester, United Kingdom, 2 Leicester De MontfortLaw School, De Montfort University, Leicester, United Kingdom, 3 Department of Neurobiology, Care Sciences and Society,Division of Neurogeriatrics, Karolinska Institutet, Solna, Sweden, 4 Centre for Research Ethics and Bioethics, UppsalaUniversity, Uppsala, Sweden, 5 Department of Bioethics and Medical Humanities, University of Chile, Santiago, ChileThe increasing use of information and communication technologies (ICTs) to helpfacilitate neuroscience adds a new level of complexity to the question of how ethicalissues of such research can be identified and addressed. Current research ethicspractice, based on ethics reviews by institutional review boards (IRB) and underpinnedby ethical principlism, has been widely criticized. In this article, we develop an alternativeway of approaching ethics in neuro-ICT research, based on discourse ethics, whichimplements Responsible Research and Innovation (RRI) through dialogues. We draw onour work in Ethics Support, using the Human Brain Project (HBP) as empirical evidenceof the viability of this approach.Keywords: ethics, IRB, review, ethics support, discourse, human brain project, discourse ethicsINTRODUCTIONEdited by:Tamer Demiralp,Istanbul University, TurkeyReviewed by:Judit Sándor,Central European University, HungaryRonald Green,Dartmouth College, United States*Correspondence:Bernd Carsten Stahlbstahl@dmu.ac.ukReceived: 15 August 2018Accepted: 11 March 2019Published: 29 March 2019Citation:Stahl BC, Akintoye S, Fothergill BT,Guerrero M, Knight W and Ulnicane I(2019) Beyond Research Ethics:Dialogues in Neuro-ICT Research.Front. Hum. Neurosci. 13:105.doi: 10.3389/fnhum.2019.00105Biomedical research, including research in neuroscience, is fundamentally driven by the convictionthat this type of research is morally good and desirable. The large amounts of public fundingavailable for this type of research are provided because of the hope that the research outcomeswill contribute to the public good and offer a better understanding of the brain. At the same time,such research can raise significant ethical concerns. Traditionally, these are linked to the nature ofthe research, e.g., invasive research on humans and other animals.At present, one can observe a continuing increase in the emphasis on the use of information andcommunication technologies (ICTs) for the collection and analysis of ever-larger neuroscientificdatasets. Such work, which we frame as ‘‘neuro-ICT’’ draws on different disciplines includingneuroscience and computer science to further our understanding of the brain. This type of work canraise additional ethical and social questions that can originate from either of the parent disciplinesor from interdisciplinary applications.Addressing these ethical and social concerns appropriately is a precondition for gaining andmaintaining institutional approval and political support, which is a requirement for both continuedfunding and successful publication of the eventual findings. Given past scandals involvingbiomedical research, a sensitive way of dealing with ethics is a requirement for retaining the publictrust and the societal ‘‘license to operate.’’Neuroscientists, in the tradition of biomedical sciences, develop an understanding of the ethicsrequirement during their socialization into the field and are normally familiar with the standardrequirements of gaining ethics approval. Many of the ethical issues that neuroscientists encounterare well established and procedures for dealing with them are well known. This is true for manyaspects of human subject research as well as animal research. Computer scientists, engineers andother technicians and physical scientists tend to have a qualitatively different exposure to andexperience of dealing with ethics, and are often less experienced with regard to ethical questions.Frontiers in Human Neuroscience www.frontiersin.org1March 2019 Volume 13 Article 105
Stahl et al.Beyond Research Ethicsintroduce the idea of an open and discourse-based approach toethics. We then explain how these ideas can be implementedusing the example of the HBP. We specifically focus onthe question of how the project engages and aligns variousoverlapping discourses, with a view to finding appropriatesolutions. This, we argue, constitutes the dialogical approach toethics that modern and highly complex data-driven research inneurosciences requires. We conclude the article by discussinglimitations and further developments of the approach.Despite the familiarity of many researchers with questionsof ethics and a broad acceptance of the need for appropriateethical sensitivity, there is growing scepticism whether thecurrent ethics governance infrastructure is fit for purpose. Ethicsreview procedures are viewed as cumbersome, bureaucraticand stifling research. This type of view is encapsulatedby Klitzman (2015) who used the provocative term ‘‘ethicspolice.’’ Schrag (2010) goes further and uses the term ‘‘ethicalimperialism,’’ albeit in the context of social sciences. This paperargues that ethics in neuro-ICT does not have to be a topdown imposition.The scepticism concerning current ethics processes cangrow exponentially in cases where precedents are not clearlyestablished because the research is breaking novel ground. Insuch cases, it may not be clear what exactly constitutes an ethicalissue, how it could be identified, and what actions should betaken to address it. This type of situation can arise when researchis undertaken across and between disciplines, especially wherethese disciplines have different views of the nature of ethicalissues and ways of engaging with them.In this article, we, therefore, ask whether there is a way ofconceptualizing and addressing ethics that is sensitive to theoften complex issues that interdisciplinary or transdisciplinaryresearch in neuro-ICT can raise without falling prey to theethical imposition of which current research ethics processesare sometimes accused. We propose a conceptualization ofethics based on discourse ethics, and demonstrate that thisallows for a broader view encompassing established ethicsprocedures but remaining open to additional influences. Wethen demonstrate the relevance of these ideas by exploringhow they have been implemented in a research project towhich all potential exacerbating factors apply, i.e., complexity,multidisciplinarity, and uncertainty. The project we present asa case for this approach to ethics is the Human Brain Project(HBP), a European-funded ICT Flagship with a duration of10 years and a financial value of several 100 million Euros.We reflect on the HBP as its participants responsible forempirical research on and practice of ethics. Our positionwithin the project provides us extensive and deep knowledge ofthe HBP, while at the same time requires to remain reflexiveregarding practical implementation challenges and ways ofaddressing them.We argue that the HBP shows that a dialogical conceptionof ethics is not only possible but may well be the only practicalway of dealing appropriately with ethical issues in modern largescale technology-enabled projects. We suggest that this examplemay help to develop good practice in future approaches to suchprojects. The contribution of the article is thus partly theoreticalin that it proposes a novel way of understanding ethics inneuroscience research, but it is also practical in that it exploresinnovative approaches to tackling these issues.To make this argument, we begin with a review of thevarious bodies of literature with a bearing on the ethics ofresearch undertaken in large-scale data-driven projects focusedon neuroscience. We then discuss the dominant approach todealing with ethics on a project level, namely the institutionalreview processes and their weaknesses. On this basis, we thenFrontiers in Human Neuroscience www.frontiersin.orgTHE ETHICS OF NEURO-ICTCurrent neuroscience research produces large amounts ofdata. Much neuroscience research aims to leverage this byapplying what can be termed ‘‘big data’’ approaches, i.e., usingdata analytics tools and methods to gain new insights. Theimmense complexity of the brain requires such approachesto develop novel insights. Such ‘‘big data neuroscience’’ workdraws on a number of scientific fields with distinct traditionsand cultures including neuroscience itself, medicine andcomputer science.We use the term neuro-ICT to denote this type of research:approaches that depend on neuroscience as well as computerscience to collect and analyze data. The proliferation ofnew large-scale brain research initiatives indicates the trendtowards neuro-ICT. It is driven by new technologies andneuroscience tools which allow for the collection of hithertounknown quantities of data which in turn require novelapproaches for visualization and analysis. Concomitantly,one can observe a growing interest in neuro-ICT from thefield of computer science where such work is seen to holdthe promise of new computing processes and paradigms thatovercome the limitations of current technologies, e.g., in thefield of artificial intelligence. The term neuro-ICT thus includesactivities that are specifically geared towards the use of ICT inneuroscience, such as neuroinformatics, but also ICT-orientedneuroscience, such as big data approaches to neuroscience andneuroscience-oriented ICT research, such as the continuingdevelopment of brain-computer interfaces and work inneuromorphic computing.There have been intensive discussions about ethics withineach of these reference disciplines of neuro-ICT. Ethicaldiscussions can also be informed by other input, such as theprofessional codes of ethics (e.g., the ACM Code of Ethics),the social and institutional position of researchers or widerpublic debates. Understanding the ethics of neuro-ICT researchrequires an awareness of the ethical discourses and traditions ineach of these fields. This section, therefore, starts by highlightingsome of the key approaches and topics in each of these areas.Sources of Ethical InsightsThe most prominent source of ethics in neuro-ICT is probablythe discourse on biomedical ethics. Going back at least tothe time of Hippocrates, biomedical ethics has produced alarge body of work to inform both biomedical practice andresearch. During the 20th century, this was formalized in theNuremberg Code (Freyhofer, 2004) and subsequently in the2March 2019 Volume 13 Article 105
Stahl et al.Beyond Research Ethicsof advances in neuroscience.’’ One of the reasons for thedevelopment of neuroethics is the nature of the brain which istypically seen as the seat of human identity and consciousness.The moral value of identity and consciousness warrants thespecific attention of a sub-discipline of ethics (Ackerman, 2006).Neuroethics covers a broad range of issues, all of which gainadditional relevance or display different angles because of theirlink with the brain. These range from fundamental questionssuch as freedom and responsibility (Churchland, 2005) or theenhancement of human capabilities (Farah, 2005) to specificissues related to particular interventions, such as deep brainstimulation or novel privacy concerns related to new types andquantities of data.Bioethics and neuroethics are closely interrelated andinterdependent. They are not the exclusive basis of normativereasoning in neuro-ICT. The ICT side of this term can also referto a long history of ethical deliberation, typically referred toas computer ethics, cyberethics, information ethics and similarterms (Bynum, 2010). The issues discussed in these discoursesoverlap to some degree with those in bioethics and neuroethicsbut they also differ in various ways. The discussion of computerethics can be traced back to the very beginning of digitalcomputing (Wiener, 1954, 1964). However, it has gained moreprominence with the more wide spread adoption of computersand the spread of the internet since the 1990’s. A recent reviewof the computer ethics literature (Stahl et al., 2016) showed thatthere is a set of relatively stable concerns that have been discussedover the last decade or so. The most prominent one of these isthat of privacy, followed by professionalism and work-relatedissues, questions of autonomy, agency and trust. There is somediscussion of specific computing technologies and the issues theyraise but also of identity, inclusion, digital divides, security, harm,misuse, deception, health-related issues and justice.This brief introduction into key foundations of normativeinsights in neuro-ICT aims to demonstrate the diversity of ethicalpositions, topics and theories that influenced the field, but cannotprovide a comprehensive overview. There are other sources ofnormativity, such as professional ethics or general philosophicalethics that can provide further input into the understanding ofethics in neuro-ICT. The overview is nevertheless sufficient toprovide the starting point for understanding the current stateof practical ethics methodologies, which is discussed in thenext section.Helsinki Declaration (World Medical Association, 2008). A veryinfluential milestone was the Belmont Report (The NationalCommission for the Protection of Human Subjects of Biomedicaland Behavioral Research, 1979) which provides the basis formuch of the practical implementation of biomedical ethics.While there are many different views on biomedical ethics, it isprobably fair to say that it is currently informed by a mid-leveltheoretical approach sometimes called principalism (Clouser andGert, 1990), which is based on the assumption of a universallyshared common morality which allows the identification ofprinciples, rules and obligations that can guide practicaldecisions (Beauchamp and Childress, 2009). Key principles arebeneficence, non-malficence, autonomy and justice.This brief overview cannot do justice to biomedical ethics andthe enormous body of work that underpins and defines it. It isimportant to recognize that biomedical ethics arose from a moregeneral discussion of ethics understood as the discipline of moralphilosophy. Moral philosophy is probably as old as humanityand deals with the question of what is right or wrong, what weshould or should not do. In current discussions one can oftensee references to some main streams of ethical thinking, notablyto consequentialism or utilitarianism (the theory that holds thatthe moral status of an action is determined by its consequences;Bentham, 1789; Mill, 1861; Verbeek, 2001), deontology (thetheory that sees adherence to duty as the main characteristicof ethics; Kant, 1788, 1797; Fins, 2009) or virtue ethics (whichsees the character of the agent as the main determinant ofethics; Foot, 1978; Aristotle and Barnes, 2004; MacIntyre, 2007).In addition to these main streams, there are numerous othertheoretical perspectives on ethics, including some developmentsof these such as discourse ethics, which will be discussedbelow. Biomedical ethics has developed in conversation withthese ethical theories and integrates many of their insights, asBeauchamp and Childress (2009) demonstrate.In addition to the rich history and intellectual roots ofbiomedical ethics, there is a large body of work that has soughtto formalize and implement biomedical ethics. Based on thework undertaken by the World Medical Association, as describedabove, there have been many efforts to implement biomedicalethics and turn these into established rules and processes. TheCouncil of Europe (1997), for example, passed the OviedoConvention aimed at protecting human rights in the biomedicalfield. Most countries with a well-developed biomedical researchsector now have ethics-related processes that govern suchresearch and that are based on these principles outlined above.However, biomedical ethics is not the only specialized field ofapplied ethics with a bearing on neuro-ICT research.Neuroethics, a relatively new field of inquiry or sub-discipline(Marcus and Dana Foundation, 2002; Leefmann et al., 2016),can best be understood as an offshoot of biomedical ethicswhich focuses in particular on ethical issues related to thebrain. It is sometimes described as consisting of two mainstrands: the ethics of neuroscience and the neuroscience ofethics (Roskies, 2005, p. 18). A more recent definition adds athird component of neuroethics (Greely et al., 2016, p. 637):‘‘the neuroscience of ethics; the ethics of neuroscience research;and, most frequently, the ethical, legal, and social implicationsFrontiers in Human Neuroscience www.frontiersin.orgCurrent Research Ethics: The IRB/RECApproachThe practice of dealing with ethical questions in research isincreasingly standardized across disciplines and national andcultural boundaries. We use the term ‘‘research ethics’’ to denotethis standard approach. Research ethics, as we understand theterm, is based on the philosophical reflections indicated in thedecades of discussion of biomedical ethics. It is important tounderstand, however, that it has been influenced in substantial,culturally and historically-contingent ways. This is most notablythe case in the US American context where research ethicsdeveloped as a way to retain scientific independence andavoid stronger research regulation by the state. Its conceptual3March 2019 Volume 13 Article 105
Stahl et al.Beyond Research Ethicsfrom within and outside the biomedical field. The most stringentrecent criticism of the IRB resume from within the biomedicalfield was likely that formulated by Klitzman (2015). He arguesthat it is not clear whether the additional administrative burdenthat research ethics review is put upon researchers actually fulfillsthe main aim of research ethics, which is the protection ofthe research subject, the human being or non-human animalthat is used to supply the data. The administrative burden andcosts associated with the IRB review process and not just anuisance, but they actually constitute an ethical issue themselves.Resources spent on ethics cannot be spent on the actual science.Where science offers the hope of ethically valuable insights,such an impediment to science requires an ethical justification(Poline et al., 2012). In attempting to address the issue ofthe administrative burden, the ethical review process may beoutsourced to external companies, which not only removesconsideration for ethics from the scientific process but may alsounnecessarily incentivize approvals (Musoba et al., 2014).Furthermore, research ethics through IRB review hasboth conceptual and empirical shortcomings which must beconsidered. One conceptual issue is that of the limitations ofknowledge. IRB decisions are typically made on the basis of priorknowledge of the members of the IRB panel. This knowledgeis partial by necessity, and may not cover relevant aspects ofthe study in question. Moreover, some possible consequencesmay be simply unknown and therefore outside the scope of theIRB review. This problem of missing knowledge is linked to theprinciple of peer review, upon which IRBs are based and whichmay not provide the required input and insights to best deal withthe relevant issues.There are numerous practical concerns with regard to thecurrent research ethics processes. The reliance on a prioriapplications can lead to a tick box mentality which opposes theidea of ethics as a form of reflective practice. By separating ethicsfrom the research process, there is a danger that it is perceivedas a specialist activity which can be outsourced and divorcedfrom the scientific research itsel
neuromorphic computing. There have been intensive discussions about ethics within each of these reference disciplines of neuro-ICT. Ethical discussions can also be informed by other input, such as the professional codes of ethics (e.g., the ACM Code of Ethics), the social and institutional position of researchers or wider public debates .
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