Respect for Persons in Research and in Genetics

Abstract

This chapter examines a central concept in ethics, that of respect for persons. This notion is widely used but understood in loose, varying, and sometimes inconsistent ways. Common ways of understanding the notion of respect for persons are explored and philosophical discussion of respect for persons is introduced, including the account given by Immanuel Kant. The scope of any imperative to show respect for persons is examined, together with its relation to personal information. The debate about the feedback of findings in genomics research is used as an illustration of how the notion of respect for persons has been used to produce practical ethical conclusions. However, a close examination of the literature shows how varying notions of respect are elided and how unwarranted conclusions may be drawn. Conclusions drawn include the need for careful elaboration of the notion of respect for persons, and the need to examine the evidential and argumentative support for a position.

Appendix: Participants at a Workshop on Respect for Persons, St. Hugh’s College Oxford, 2010

Mhairi Aitken, University of Edinburgh

Louise Bezuidenhout, University of Exeter

Arndt Bialobrzeski, University of Marburg

Roger Bjugn

Meghan Bruce, University of Oxford

Isabelle Budin-Ljøsne, the Norwegian Institute of Public Health

Paul Burton, University of Leicester

Yu-mei Chang, University of Oxford

Alan Doyle, NIGB Director

Stephanie Dyke, Sanger Institute

Khaled El Emam, University of Ottawa

Claudia Emerson

Grethe Foss, Norwegian Biotech Advisory Board

Donna Gitter, City University of New York

Bryce Goodman, University of Oxford

Edward Gosden, University of Oxford

Jane Green, University of Oxford

Alison Hall, PHG Foundation

Shawn Harmon, University of Edinburgh

Naomi Hawkins, University of Exeter

Nils Hoppe, Leibniz Universität Hannover

Tim Hubbard, Sanger Institute

Jane Juniper, AstraZeneca

Dorcas Kamuya, Wellcome Kilifi, Kenya

Barbara Koenig, Mayo Clinic

Ayumi Koso, the Database Centre for Life Science

Jacob Leveridge, Wellcome Trust

Matteo Macilotti, University of Trento

Aisha Malik, University of Oxford

Kenji Matsui

Karen Melham, Oxford Bioethics Network

Mari T. Minowa, the Database Center for Life Science

Madeleine Murtagh, University of Leicester

Kieran O’Doherty, University of British Columbia

Saminda Pathmasiri, Public Population Project in Genomics

Cedric Pruski

Emmanuelle Rial-Sebbag, Genetics and Society Platform

Mark Robertson, AstraZeneca

Behnaz Schofield, Universal of Bristol

Nayha Sethi, University of Edinburgh and SHIP Project

Liliana Siede, Adviser National Congress of Argentina

Carol Smee, Sanger Institute

Liliana Soto Gomez, University of Leeds

Anne- Marie Tasse, Centre of Genomics and Policy, McGill Universit

Paulina Tindana, University of Oxford

Prodromos Tsiavos, LSE

Louise Vale, Consultant

Christine Wasunna, Kenya Medical Research Institute

Edgar Whitley, LSE

Don Willison, OAHPP

Stefan Winter, Hannover Medical School

Jessica Wright, Leicester University

Vicki Xafis, Public Health, University of Adelaide