Institute of Anatomy – Centre for Evolutionary Medicine Appraisal of a problem: ethical dimensions of evidence-based research on human remains Bettina M. Kreissl Lonfat, Frank J. Rühli

Institute of Anatomy – Centre for Evolutionary Medicine Table of Contents I.The emergence of a problem II.A possible solution

Institute of Anatomy – Centre for Evolutionary Medicine Emergence of a Problem o Evidence-based Mummy Research and medical research o The pressure point o Why treat with respect and dignity isnt enough anymore

Institute of Anatomy – Centre for Evolutionary Medicine Evidence-based Mummy Research and medical research Research done on mummies and historical human remains is becoming more and more invasive -Probable progression: the more precise scientific progress will become in terms of diagnostics, the more invasive it will become for research on historical human remains -Probable consequence I: the more progress there is, the more concrete is the advantage and the possible gain for medical research and clinical application -Probable consequence II: the more immediate the clinical application is, the greater the pressure to do evidence-based research on mummies and historical human remains

Institute of Anatomy – Centre for Evolutionary Medicine The pressure point The use of human remains in clinical, medical research: 1) Modern use: clearly regulated by a set of laws, rules and protocols -It is regulated what can be used, under what circumstance, when it can be used and what for and by whom 1 -Ex negativo: it is clearly regulated what cannot be used, what cannot be done and by whom 2 ) The use of historical human remains for clinical research is a recent development -no regulations what they can be used for, by whom, and in what projects -Only a golden rule: treat respectfully and with dignity 1 1 For instance guidelines by the Swiss Academy of Medical Sciences for body donations(2008) 2 Society for American Archaeology: Repatriation Policy (online); Principles of Archaeological Ethics (1995) – American Anthropological Association: Code of Ethics (2009) - International Council of Museums: Code of Ethics (2004) – British Association for Biological Anthropology and Osteoarchaeology: Ethics and Standards (online)

Institute of Anatomy – Centre for Evolutionary Medicine Why treat with respect and dignity isnt enough anymore Status of applied ethics of research on human remains has remained at the level of the first initiatives of ethics in museums (ICOM 1 ) or excavation (BAOBA 2 ). Today mummies and historical human remains are used in invasive procedures such as bone-crushing for aDNA extraction or irradiation for radiological analyses. The medical diagnostic exposure and the physical destruction do constitute a harm that hasnt existed before and therefore needs to be addressed differently. Philosophical Postulate: there is something like posthumous harm. And it cannot be solved with already existing theoretical frameworks or ethical guidelines. 1 International Council of Museums: Code of Ethics (2004) 2 British Association for Biological Anthropology and Osteoarchaeology: Ethics and Standards (online)

Institute of Anatomy – Centre for Evolutionary Medicine A possible solution o The Centre of Evolutionary Medicine of Zürich o The starting point o The working paradigm in the field o Continued discourse vs. an ethical committee

Institute of Anatomy – Centre for Evolutionary Medicine The Centre of Evolutionary Medicine of Zürich As a newly founded centre, the ZEM (Zentrum für Evolutionäre Medizin) has had the unique chance to start the dialogue from a new – philosophical – perspective. Aim: With the research that is already being done at the ZEM, the fields of problems that arise are immediately obvious, because they are always linked to one of our research fields (such as imaging, data generation through CT Scans or DNA identification). Our principle aim is to protect the research that is already established, not justify it. Solution: Formulation of a framework organised according to very real ethical problems at the ZEM Formulation of a Code of Ethics for for internal use at the ZEM but open for discussion with the whole research community

Institute of Anatomy – Centre for Evolutionary Medicine The starting point The ZEM as a part of an institution of higher learning, is committed to three main goals: Contribute to scientific progress, inform and teach a larger public and society in general about our research, and show transparency in our protocols, our research and the goals that we follow. (…) Thus the ZEM is committing itself to an on-going discussion and formulation of an ethical code of conduct that asks a strong personal commitment and continuing work to improve guidance for the researcher in particular. (…) This code of conduct comes from a specific unease in regards to the under-definition of certain problematic situations in studies on mummified bodies, body parts, or any other kind of historical human remains. As such it addresses only these specific problematic situations that arise from current work at the ZEM and not similar situations identifiable in other fields of research (such as archaeology, anthropology, museums, etc.). This code wishes to be understood as a communicative action of the researchers of the ZEM, collaborators and affiliated persons rather than a prescriptive set of rules or guidelines. It is formulated with the distinct wish to initiate and further discussion about the ethical dimensions and implications of medical research on mummies in particular and human remains in general. (Preamble, ZEM Code of Ethics, Sept 2011)

Institute of Anatomy – Centre for Evolutionary Medicine The working balance: appropriateness vs. invasiveness -Consent in the medical sense can never be transferred. For historical human remains this creates a void of intentions, wishes, interests and refusals -Concerning bodily integrity, personal privacy, the after-life of their bodily remains an/or undisturbed peace after death -With possible important diagnostic results, the researcher needs to find a working matrix to help them decide what is ethically sound to do and what not. -Appropriateness vs. invasiveness

Institute of Anatomy – Centre for Evolutionary Medicine Continued discourse vs. an ethical committee Advantages: -The balance between appropriateness vs. invasiveness allows for constant evaluation -Allows for case per case reflection and discourse Ethical committee: -Will discuss a proposition and decide once -Rarely is there a follow up discussion if there wasnt a substantial change in situation

Institute of Anatomy – Centre for Evolutionary Medicine Conclusion

Institute of Anatomy – Centre for Evolutionary Medicine Ethical FrameworkPage 13 Conclusion -Awareness Raising of critical issues in favor and support of evidence- based research with human remains -Constant balancing between the degree of invasiveness (or destruction) and the appropriateness (e.g. rarity of samples, importance of research results) -Protection and assurance of high quality research Limitations: -Applicability for the complete supply chain -Commitment of involved suppliers that are not directly affiliated (as defined in the code) to the ZEM -The Newness of the Topic

Institute of Anatomy – Centre for Evolutionary Medicine Acknowledgements We thank the Mäxi Foundation for their continued generous support. Our Code of Ethics: Contact and updates through: