Stanford Center for
Biomedical Ethics
New Genetics Project
welcome

This project is funded by the National Human Genome Research Institute’s (NHGRI) Ethical, Legal and Social Implications (ELSI) Program at NIH.  PI: Sandra Soo- Jin Lee, Ph,D. #R01HG05086

Research Project

Social Networking and Personal Genomics: Emerging Issues for Health Research

Rapid development of increasingly efficient high throughput genetic sequencing technologies and ubiquitous internet use by the public has brought about the emergence of an increasing number of direct-to-consumer (DTC) personal genomic information (PGI) companies.  The growing industry premises its services on several paradigm shifts regarding how the public views and uses personal genomic information.  First, DTC PGI companies assert that knowledge of a person’s genetic code is empowering and will enable individuals to make better decisions about personal health, medical care and lifestyle.  Second, the new era of openness facilitated by the internet and by new technology challenges traditional approaches to genetic testing and therefore requires new ethical approaches towards protecting consumers.  Finally, DTC PGI companies believe that they can take the lead in ‘scaling up’ genotypic and phenotypic population DNA data collections, relying on easy and continued access to their consumers over the internet. 

To evaluate and explore the validity of each of these claims this study, in collaboration with the leading DTC personal genomics company, 23andMe, Inc., will examine the ethical and social implications of DTC personal genomics.  Network ethnography (Howard 2002) will be used to trace how and with whom individuals share their personal genomic information, to examine attitudes and perspectives among DTC PGI consumers, and to investigate how companies create online tools which form strategic collaborations and networks.  Over the course of the study, researchers will conduct a series of focus groups and one-on-one interviews with consumers and personnel to:

  1. Trace the life course of personal genomic information and map the social networks created through the sharing of direct-to-consumer genetic testing results.
  2. Identify the motivations for sharing personal genomic information and the expectations, interpretation and application of personal genomic information among primary and secondary members of social networks, including family members, friends, health professionals and acquaintances, patient advocacy organization, and biomedical researchers.
  3. Describe in ethnographic detail the development of online sharing infrastructure and 23andWe, a web-based tool to facilitate large scale genomic research among direct-to-consumer genomic customers.
  4. Identify the technical, social and ethical implications of online sharing of personal genomic information and the participation of DTC genomic consumers in company sponsored biomedical research.

Publications and Presentations »

project Team

Principal Investigator
Sandra Soo- Jin Lee, Ph. D.
Senior Research Scholar, Center for Biomedical Ethics, School of Medicine, Stanford University
(bio/cv)

Co-Investigators
Jennifer Aaker, Ph. D., MBA
General Atlantic Professor of Marketing, Graduate School of Business,  Stanford University
(bio/cv)

Mark Granovetter, Ph. D.
Joan Butler Ford Professor, Department of Sociology, School of Humanities and Sciences, Stanford University
(bio/cv)

Henry Greely, J.D.
Deane F. and Kate Edelman Johnson Professor of Law and Professor  Department of Genetics (by courtesy), Stanford University
(bio/cv)

Kelly Ormond, M.S.
Associate Professor of Genetics and Director of the Genetic Counseling Program, School of Medicine, Stanford University
(bio/cv)

Project Manager
Emily Borgelt
Center for Biomedical Ethics, Stanford School of Medicine, Stanford University
(bio/cv)

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