In previous issues of Food Today we looked at possible outcomes from research into the interaction of genes and nutrients. However, the potential benefits are tempered by various ethical, legal and social questions that must be addressed.
Scientific advances now allow our genetic profile to be examined, which in turn could be used by employers, insurance companies and others to identify people with a genetic predisposition for a particular illness or condition. This information could, theoretically at least, be used to discriminate against individuals. Most of the information obtained from genetic research has never before been available resulting in new challenges in the interpretation and use of such information. Issues concerning confidentiality and human rights that result from scientific advances must be addressed by society.
One critical issue is privacy and fairness in the use of genetic information. For example, privacy of information on an individual’s genetic profile by groups such as employers, insurance companies, schools and adoption agencies must be absolute to avoid genetic discrimination. Several companies in the United States have banned the use of DNA testing in job applications in an effort to address this concern. Some countries, such as Iceland and Estonia are taking a bold approach to develop genetic databanks of the whole population. Coupled with other data such as health statistics, this information has potential benefits in helping governments to determine future health policies and funding. However, the information is also of great interest to many third parties. A proper balance between individual privacy and the fair use of genetic information must be identified. In some countries, this may be covered by anti-discrimination regulations although the scope of such coverage has not yet been tested in the law courts.
Ownership of information
The question of ownership of genetic information and technologies derived from genetic research is yet another area that requires deliberation and international debate. The EU European Group on Ethics and Science in New Technologies has been examining the issue of patents in agricultural genetic research and has introduced measures to govern fairness in this area
(EU Council Directive 98/44/EC). The area of patenting in human genome research is still being addressed
Interpretation of information
Along the same line of thought, there is a great deal of work that still needs to be undertaken on the education of health care personnel and patients on the evaluation and use of genetic tests. Many diseases are linked to multiple genes and are influenced strongly by environmental factors. For example, how should tests that show a predisposition to a disease such as breast cancer be interpreted? Standards and quality control measures in genetic testing are currently the subject of intensive and ongoing research.
No easy answers
There are no easy answers to the above questions. Ethical, legal and social issues pose challenges as research into the human genome progresses. A great deal of work is progressing to address these concerns and to foster public understanding of the technology so as not to slow scientific progress. One of the challenges will be to balance the multiple benefits that can be derived from better nutrition knowledge with ethical and social challenges. As with any new technology, the public must have access to information and be engaged in an open debate about the impact of genomic research on their lives so that they can make informed choices.
References
- The United States Department of Energy, Human Genome Project
website www.ornl.gov/TechResources/Human_Genome/ - European Parliament and Council Directive 98/44/EC, 6 July 1998. Official Journal L213, 30-7-98
FOOD TODAY 06/2006