Genetics and society supplementary book proposal
Wednesday 27 July 2011, 12:00pm - 1:00pm

Objective: to provide a user-friendly comprehensive resource book as a supplement for courses in genetics/molecular biology/bioinformatics. Interested parties can attend to discuss development of structure, format and content for the book. The project is intended to be collaborative and will benefit greatly from the Tarrytown meetings’ wealth of expertise.


Concept: The book will present ethical, legal and social implications (ELSI) of advances in genetics (or bioscience depending on scope) in a format that is easily integrated into existing science courses. After an introductory chapter on the basic principles of ethical theory each chapter will discuss a topic in genetics pointing out areas of controversy, providing links to readings that explore multiple viewpoints and controversies and linking to at least one case study/ student exercise. The supplementary materials should be structured with various layers of critical sophistication so that the book is useful at many levels.


Need: Most science faculty agree that their students should learn about the social applications and ethical implications of the science they are being taught. And many express a desire to include ELSI issues in their own classes but cite a ‘lack of time’ as the primary reason for not pursuing ELSI topics as much as they would like (Booth & Garrett, 2004). There is a serious lack of resources in this area. There are texts and compilations of readings for bioethics courses, books that discuss a particular topic from an individual perspective (e.g. pro- or anti-GMOs), or STS critiques of areas of science. Faculty teaching inter-disciplinary genetics/ethics courses have to develop their own syllabi drawing together primary readings (see the education session) and these syllabi are probably the best resources currently available to teachers wanting to include ELSI in their courses. The proposed book should encourage teachers of primary science courses to include more ELSI in their syllabus by providing the content and exercises that segue easily with their current coursework.


Preliminary Suggested Outline:

A. Eugenics. Author suggestion: Garland Allen ( he has written many of the summaries on the CSHL Eugenics Archive website & I have heard him present at ISHSSPB meetings.

B. Identity/Privacy – myriad of issues that arise from our ability to use genetics and bioinformatics to identify an individual and to analyze traits about that individual. This could be parsed in many different ways. E.g.

       a. Issues in Forensics

i. Historical – e.g. Romanovs

ii. Current – Innocence Project, DNA databases – universality, military,

       c. Issues in Society

i. Privacy, insurance, HIPAA, GINA

ii. Workplace

iii. Commercial DNA testing – 23andMe etc. – regulation?

C. Genetic Medicine

       a. Testing

                        i. Newborn – PKU, Diane Paul’s critique

                       ii. Pre-natal – expanding availability of tests (could link to mitosis/meiosis chapter – karyotyping), fetal surgery.

                       iii. Pre-implantation – issues of accessibility.

       b. Pharmacogenetics – genome based medicine, Bidil.

       c. Genetic ‘cures’

                       i. Gene Therapy – somatic/ germ line

                       ii. Cloning – transplants,

D. Genetic Modification

        a. Manipulation of organisms

i. Research. E.g. Transgenic mice– patenting

ii. Agriculture – GM plants & animals. US vs Europe vs Developing countries attitudes/ justifications.

iii. Humans - Utopian design. Germline gene therapy & cloning. Therapy/enhancement divide – full circle to eugenics.

E. Other issues I might like to include

        a. DNA ancestry, population genetics – perhaps reorganize into a genetics & race section with Bidil story.

        b. More peripheral uses of testing e.g. genes for athletic ability

        c. DNA iconography – genetic determinism in the centrality of the DNA helix

        d. Ethics training - Hippocratic oath for scientists

        e. Who decides, who decides. Expert vs public decision making.