“Ethical, Legal, Social Issues” (ELSI) Program
“Ethical, Legal, Social Issues” (ELSI) Program
Philippine Genome Center
ELSI Program Office
Center for Integrative and Development Studies
Bahay ng Alumni
University of the Philippines
Diliman, Quezon City
Website
pgc.up.edu.ph
Core Group
Prof Marcia Ruth Gabriela Fernandez (sociology, law)
Prof Renato Manaloto (bioethics, law) – Assistant Program Director
Prof Peter Sy (bioethics) – Program Director
Scientific Advisory Committee
Dr. Marita Reyes (medicine, bioethics)
Dr. Leonardo de Castro (bioethics)
Research Assistant
Maribel Dano (communications research)
About the ELSI Program
Established in 2011, the ELSI (Ethical, Legal, Social Issues in Genomics) Program of the Philippine Genome Center (PGC) is a multidisciplinary initiative that seeks to identify and deliberate the ethical, legal, and social issues in genomics. It works for the integration of ethical, legal, and social considerations into the practice of genomic research in the Philippines.
Using analytical tools and perspectives honed in the social sciences, philosophy, and law, the ELSI Program seeks to cover issues ranging from the public health implications of genomics to the current legal and social challenges to its researchers in the country; from issues of food security, environmental sustainability, and social acceptability of genomic research in agriculture to issues of informed consent, privacy, confidentiality, and levels of understanding of participants in genomic research.
The Program also investigates governance issues in the creation, maintenance, and administration of repositories and archives of genetic materials. Questions concerning the use, sharing, and security of biological samples (e.g., those collected from the Newborn Screening Program) will be examined.
While the Program raises tough social, ethical, and legal questions, it seeks to engage the scientific community in ways that help make Philippine genomic research a reflexive, productive, socially responsible enterprise. It seeks to facilitate a conversation among health care providers, policymakers, researchers, opinion makers, laypersons regarding genomics in the Philippines; to help achieve greater clarity in the public appreciation of genomic research and the scientists’ understanding of public knowledge and attitude towards science.
Priority Issues and Projects (Draft Proposal)[1]
1. Workshops, Seminars, Conferences, or Colloquiums on the Ethical, Legal, and Social Issues in and Challenges to Genomics in the Philippines
To be conducted at least twice a year, these are gatherings of practitioners, researchers, academics, policy-makers, and other professionals to identify, analyze, and address the ethical, legal, and social issues and challenges arising from the practice of, research in, and policy-making for genomics in the Philippines. Specific topics for these gatherings include:
(a) Prohibition on Transport of DNA of Endemic Plants like abaca, saba, and pili
(b) Partnership with Private Companies on Genomic Researches
(c) Intellectual Property Rights Relating to Genomic-Research-Improved Varieties
(d) Regulations and Guidelines for Mutual Transfer Agreement in Genomic Researches
2. Ethical, Legal, and Social Investigation and Analysis on Creating, Maintaining, and Administering Repositories and Archives of Genomic Samples and Data
As one of ELSI’s core projects, this is an examination and analysis (using the tools, methods, and perspectives of the social sciences, ethics, and law) of the creation, maintenance, and administration of, and the research on, repositories and archives of genomic samples and data. Specific topics for this project include those concerning the use, sharing, and security of biological samples and data in Genomic Research (e.g., data and samples from the Newborn Screening Program).
3. Public understanding of genomics and the ethical, legal, and social issues relating to recruitment of genomic research participants
Using social research methodologies, this Project probes into the Filipino public's understanding and concerns about genomics and how adequately it might support participation in genomic research. Recruitment issues like informed consent, privacy, levels of understanding are explored using FGDs, interviews, surveys and meta-analysis of recent literature on these issues.
The Project also seeks to facilitate more substantive dialogue among health care providers, researchers, and laypersons regarding genomics in the Philippines. Public forums, media engagements, stakeholders are sought to help clarify genomic research and public concerns about it.
The Project could serve as input to the other programs of the PGC.
4. Biodiversity, agricultural applications of genomics, and food security
This Project seeks to investigate the ethical, legal, and social implications of efforts to apply genomics to Philippine agriculture to help ensure food security. Social factors like population growth, urbanization, changes in consumption patterns, create tremendous pressure on our biodiversity and on genomic researchers in agriculture to help increase healthy and environmentally sustainable food supplies from crops, livestock, fisheries, and aquaculture.
What are the ethical, legal, and social tradeoffs that we face in our efforts to achieve food security through genomics?
5. Intellectual Property Rights (IPR) Issues in Genomics
This Project examines the ethical, legal, and social issues regarding the intellectual property rights to the practice, research, and development in genomics, and the effects of such rights not only on individuals and the public, but also on drug researches and developments, health care programs, and public health policies.
It also identifies and suggests from the many perspectives of the social sciences, ethics, and law the appropriate intellectual property protections for discoveries and developments in genomics.
6. Social, Ethical, and Legal Assessment of the Non-Medical Uses of Genomic Data
This is a social, ethical, and legal assessment of the non-medical uses of genomic data in, for example, forensics, litigation, paternity test, ancestry or genealogy tracing, mental health history, determination of migration patterns, insurance enrolment, or employment decision-making.
It also identifies and suggests ways to address specific problems arising from genomic data like employment or insurance discrimination, stigma from mental illness, exploitation, and breach of privacy and confidentiality.
7. Public health concerns
This Project focuses on the public perception of risks involved in genomic research, genetic discrimination, cost of health care and insurance, regulation of genetic tests and products directly marketed to the public.
8. Genetic counseling
This Project seeks to “embed” genetic counseling program in PGC projects involving human subjects.
Notes
- ↑ Presentation to and feedback from: PGC EXECOM – 2 Nov 2011; ELSI Core Group – 4 Nov 2011; ELSI SAC – 5 Nov 2011.