September is “DNA, Genomics and Stem Cell Education and Awareness Month.” This type of research is proceeding as quickly as ever, but few federal laws and a patchwork of state laws protect the privacy of research subjects. Also, the controversy over stem cells has not abated, leaving many who might be helped by them at a loss for possible treatment. There are additional controversies: how DNA data banks are used in police departments; the various implications of genetic testing, and the patentability of a person’s DNA, just to name a few. For all groups of people affected in different ways by genetic research, the following is a short list of resources on the subject:
- Johnson’s Bioethics in a Nutshell (Database Identifier: BIOETHIC-NS)
This Nutshell book delivers a concise take on multiple areas of bioethics, and has sections on genetics, research subjects, and the ethical obligations of researchers.
- Nanotechnology Law (Database Identifier: NANOTECH)
This database is billed as a “comprehensive single legal source for all issues related to nanotechnology” and focuses on IP and environmental issues.
- BNA Chemical Regulation Reporter – Current Reports (Database Identifier: BNA-CHEM)
This publication analyzes judicial, legislative and executive actions in terms of their effect on chemical manufacturers, including biotechnology manufacturers.
- Legal Medicine (File LEGMED)
Legal Medicine publishes original articles that address the intersection of law and medicine. Special emphasis is given to articles covering DNA analysis, and articles on medical ethics are also featured.
- New Atlantis (File NEWATL)
This periodical is a bold undertaking that strives to deepen an understanding of the issues surrounding technology and society, not only among the public and policymakers, but also among scientists and researchers.
- Northwestern Journal of Technology and Intellectual Property (File NJTAIP)
This journal is devoted to the study of IP law in relation to technology, and as such it has a good deal to offer on biotechnology, ethics, and the law.
Books and Periodicals
- Journal of STEM Education: Innovations and Research (ISSN: 1557-5284)
This periodical features case studies in science and technology research, including biotechnology. Special emphasis is given to studies that cover the non-technical side of research, such as management, risk, finance, and so on.
- Bioethics (Online ISSN: 1467-8519)
Bioethics offers a platform to debate ethical, legal and policy issues in relation to biotechnology research.
- Genetic Justice: DNA Data Banks, Criminal Investigations, and Civil Liberties by Sheldon Krimsky and Tania Simoncelli (ISBN 9780231145206)
Krimsky and Simoncelli address the recent use of law enforcement DNA data banks to store data for people other than violent criminals. In organizations that use these banks to store the DNA of all arrestees (even juveniles), civil right issues have arisen. The authors study this trend from an American perspective, but also compare the United States to Australia, Japan, and some European countries.
Websites of Interest
- Genetic Information: Legal Issues Relating to Discrimination and Privacy (http://assets.opencrs.com/rpts/RL30006_20080310.pdf)
This CRS report addresses the ways in which legislatures might approach genetic research.
- Genetic Discrimination (http://www.genome.gov/10002077)
This website delves further into genetic nondiscrimination legislation, and provides links to state-level and federal laws.
- Hastings Center (http://www.thehastingscenter.org/Default.aspx)
The Hastings Institute is a nonpartisan organization that studies bioethics. Their website compiles special reports, articles, and briefs on genetic screening, stem cells, and many other related subjects.
Join me in celebrating DNA, Genomics and Stem Cell Education and Awareness Month.
Jennifer Dismukes Vail
Diversity Committee Chair, SLA Legal Division