Genomics and Society: Bioethical Research

The Science & Justice Research Center (SJRC) at UCSC, lead by founding director and UCSC Sociology professor Jenny Reardon, works to infuse genomics — and all science — with commitments to justice. It believes science is not just about what happens at the lab bench; it shapes the nature of our present and future. SJRC informs and trains a new generation of leaders who can create science and technology that are responsive to diverse needs and tackle complex, pressing problems, including race, health and social justice, conservation of ecologies and ways of life. By bringing together diverse international leaders, it aims to shape big biodata and precision medicine’s science and justice agenda and broaden the public discussion to address fundamental questions about the right and just constitution of care, trust, and knowledge in an age of biomedical data.

Learn more about our initiatives focusing on genomics and society:

Genomics, Difference, & Justice

Next-generation genomic research offers ground-breaking modes of representing and understanding biological differences. This research addresses changing conceptions of both natural and social order; how new understandings and representations of difference speak to concerns with justice; and how genomic sciences fits in a world where resources are becoming scarcer. This area of research builds on Jenny Reardon’s internationally recognized research on genomics and society, probing the area of race, difference, and genomics. Reardon’s work and that of the Science & Justice Research Center guide the GI’s efforts to realize a genomics that truly attends to and cares for society.

Ethical, Legal, and Social Implications (ELSI) of Genomics Research

UC Santa Cruz Genomics Institute is invested in promoting discussion of the societal issues that need to be studied and addressed as genomic science and medicine move forward. These are described in the National Human Genome Research Institute’s (NHGRI) 2011 Strategic Plan section titled “Genomics and Society.”

Concerns may include ethical, legal, and social implications (ELSI). The Ethical, Legal, and Social Implications (ELSI) program was founded in 1990 as an integral part of the Human Genome Project. More information about the ELSI program at the National Institutes of Health, including program goals and activities, is available here.

The Office of Diversity at the UC Santa Cruz Genomics Institute was established in part to ensure ELSI program concerns are studied and researched at the institute and that a diverse group of genomics scholars has the opportunity to study ELSI topics. Learn more about diversity initiatives at the institute.

Open Access Human Genome

Aside from the fascinating scientific possibilities, an initial driving concept in the UC Santa Cruz Genomics Institute was to make the genome that contains our common heritage available to all, free of patenting and licensing restrictions. This was based on the belief that the genome belongs to all humanity, and so genomics research and its findings should transcend national boundaries.

Having achieved the goal of unrestricted access, the UC Santa Cruz Genomics Institute continues the work of the Human Genome Project as it considers the ethical issues presented by our deepening understanding of our genome and its workings. Challenges emerge as the biomedical ethos of privacy and protection meets the ethos of openness forged by leaders of the Human Genome Project. Efforts to introduce crowd sourcing to knowledge production plus interest in empowering individual consumers and patients have potential implications in the realm of biomedicine. Research in this area maps how these initiatives may challenge traditional biomedical practices of consent, property, and privacy.

Human Genome Diversity & Variation

In addition, rather than assembling the genome sequence of just one individual human, the International Human Genome Project working draft combined anonymous genomic information from human volunteers of diverse backgrounds, accepted on a first-come, first-taken basis. After they were collected, the samples from the volunteers underwent further random selection, so that no donor knows whether his or her genome was actually included in the draft sequence.

Genetics-Based Discrimination

Knowledge of the human genome can pose risks as well as benefits for society. Among the shorter-term risks are the specter of discrimination in employment and health insurance based on genetic information and the possibility that certain groups in society will be stigmatized based on higher incidence of particular versions of genes within these groups.

Beyond supporting legislation intended to address discrimination issues, we seek to involve a diverse array of societal groups in the process of developing and disseminating our new genetic knowledge. This is an exploration of all of the diversity and commonality of our human heritage. To help achieve this goal, we have applied for and received a supplement to our NHGRI grant that is specially designed to engage individuals from underrepresented groups in our research and educational mission.

Explore our diversity program for more information.

Genetic Counseling

As genomic technology evolves, it will become increasingly easy for individuals to learn about their genetic predispositions. For some individuals, this will bring the unintended negative consequence of knowing that he or she has a currently incurable genetic disease that will manifest itself later in life. The UCSC group strongly supports the efforts of NHGRI to work with public health agencies to train individuals to provide professional genetic counseling services.

Genetic Selection

One significant risk considered in genomics research is that knowledge of our genome, combined with technologies like CRISPR for modifying or selecting the genetically inherited traits will create social pressures to try to “enhance” or “correct” our genes. This brings up ethical issues that demand widespread discussion engaging all segments of society. It also brings up the importance of maintaining genetic diversity as a protection from disease or other threats to our viability.

Knowledge of the human genome has a tremendous potential to heal. This potential must be appropriately balanced against the possible negative consequences that this knowledge may also bring into focus.