What is ELSA? Hub Zwart Director CSG Radboud University, The Netherlands. NCMLS Course September 15, 2006 ELSA

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1 What is ELSA? Hub Zwart Director CSG Radboud University, The Netherlands NCMLS Course September 15, 2006 ELSA Ethical, legal, social Aspects of Science 1

The Century of the Gene Evelyn Fox Keller

rediscovered 1905: Genetics 1953: Watson &

2 The Century of the Gene Evelyn Fox Keller (2000) The Century of the Gene. Cambridge Mass.: Harvard University Press 1900: Mendel rediscovered 1905: Genetics 1953: Watson & Crick Structure of DNA 2000: Human Genome 2004: Human Genome Gregor Mendel ( ) 2

3 Mendel: innocent research? 3

4 Watson & Crick (1953) 4

5 5

6 Director Human Genome Project 1988 The Human Genome Project

7 Francis Collins 7

8 Craig Venter 8

9 Craig Venter The Human Genome Project ( ) 9

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12 Michel Foucault: What is an author? MLS Research Large-scale multi-centre, interdisciplinary programs Immense funding (HGP: 3 billion $; Netherlands Genomics Initiative ) ELSA program Fundamental research directed towards important societal & policy issues (aging, cancer, global food issues, environmental issues, etc.) 12

13 ELSA Genomics HGP ELSA program Centre for Economic and Social Aspects of Genomics (CESAGen) Centre for social and economic research on innovation in genomics (Innogen) Centre for Genomics in Society (Egenis) Centre for Society & Genomics (CSG) 13

14 Traditional science research Mono-disciplinary research Retrospective General issues Looking at science from a distance Science vs. Society ELSA Research Inter-disciplinary collaboration (sciences, social sciences, humanities) Embedded in science programs Anticipatory Proximity to scientific research Knowledge society 14

15 Traditional science ethics Individual level (micro-ethics) Personal responsibilities Community of scientists as an almost ideal world (equality, transparency, intellectual communism) ELSA Genomics Macro-level Science governance Critical reflection on how science actually works 15

Immanuel Kant (1724 1804) Act in such a way that we treat humanity, whether in ourselves or in others, as a means only but always as an end

Principle of informed consent Ethics = a critical tool for assessing research practices Kantian Ethics Micro-ethics ( Moralität ) Focus on

16 Immanuel Kant ( ) Act in such a way that we treat humanity, whether in ourselves or in others, as a means only but always as an end in itself. Principle of informed consent Ethics = a critical tool for assessing research practices Kantian Ethics Micro-ethics ( Moralität ) Focus on the individual agent (individual moral subject) Ethics is about responsibilities (of individual researchers) towards individual research subjects Follow your own rules (rather than conforming yourself to group-behavior) N = 1 (face-to-face ethics as paradigm) Cf. Levinas 16

Problems: scale and power Informed consent industry Failure to see IC in a broader context, for example as a contrivance that facilitates research Power issues Our dominant focus on individual rights

17 Problems: scale and power Informed consent industry Failure to see IC in a broader context, for example as a contrivance that facilitates research Power issues Our dominant focus on individual rights [is] ill-suited to reflecting on large scale collaborative research (Williams 2005, GSP) Requiring consent will not, by itself, alter the fact that uncoordinated individuals are always subject to the power of organised groups or institutions (idem) Important social, political and scientific questions are left out of consideration (idem) Georg Wilhelm Friedrich Hegel ( ) From micro- to meso- and macro ethics Sittlichkeit 17

18 Sittlichkeit Institutionalization ( realization ) of ethics ( best practices ) Individual actors as participants in complex networks that guide and facilitate certain types of behavior Practices, routines, committees, guidelines N = many Responsibilities of researchers towards a large number of anonymous, invisible others Sittlichkeit Ethics committees: monitoring, quality control, standards of performance Harmonization Globalisation of science ethics 18

19 Three papers Merton Gottweiss & Triendl Netherlands code of conduct for scientific practice Questions To what extent does Merton s article exemplify the traditional paradigm of science ethics? To what extent does the article by Gottweis and Triendl exemplify the ELSA genomics paradigm? Is the Code of conduct a specimen of traditional science ethics or does it represent an ELSA genomics approach? 19

Historical Development of Biotech

Historical Development of Biotech Introduction The purpose of this activity is for your students to identify the important milestones in the development of. People generally think of as being a new phenomenon;