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Examining the “E” in ELSI (Walker)
Significance: As genomic research scales-up, so should the level of justification supporting the aims and methods involved in ELSI analyses. This project will address the proper aims and methods of an ethics researcher with respect to large-scale genomic research. Specifically, are the proper aims of the ELSI ‘ethicist’ to play the role of ‘watchdog’ and advise genomic researchers (and policy makers) how to act in an ethically appropriate manner and create ethically sound policy; or to analyze and investigate ethical concepts and theoretical constructs relevant to genomic research? And, are the proper methods to use in ELSI ethics research primarily concerned with ethical concepts, principles, and theories; or are the proper methods to find out how research subjects, investigators, policy makers, and the general public view ethical issues involved in genomic research? These ideas and presumptions are often unexamined even by the individual researcher and are rarely the subject of general discussion and contemplation by the ELSI community.
ELSI work is very young relative to ethics generally and even relative to its closest neighbor, bioethics. Furthermore, those involved in the ethics angle of ELSI research come from many different disciplines, making it difficult to hold such a discussion in terms equally available to all. Yet the resources for such a discussion are vast. Within ethics generally, discussion and scholarship about proper aims of ethics and about ethics methodology are common and considered absolutely central. Within bioethics, research and scholarship on a wide variety of methods and the adequacy of each are well established. Just a few examples of different methodological approaches to bioethics include a principle-based approach, a moral system approach, a casuistical or ‘case based’ approach, and a narrative ethics approach. It is certainly true that where such explorations of aims and methods have been undertaken, no conclusions have really been drawn for either ethics or bioethics. Perhaps this means that these explorations are tangential to the actual ‘doing’ of ELSI research. Yet, if this is the case, such an argument must also be made. What is no longer appropriate in this era of scale-up is ignoring background questions of aims and methods altogether.
Research Question 1: Which types of general ethics or bioethics aims and methods are employed in the ethics aspects of ELSI research?
Research Question 2: Which aims and methods of ethics in ELSI research are well supported by argument and/or by evidence?
Research Question 3: How might the answer to Research Question 2 challenge or transform the practices of ELSI researchers?
Outcomes: This project fits well with the general themes of disclosure and informed consent by asking by what methods should ELSI investigations into ethically charged topics proceed, and what should they aim to achieve. It also relates to the mission of translation into application and policy by asking about the relevance of ethics work to the creation of public policy. Are ethics experts suited to such tasks? By what methods?
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