E.L.S.I.

     ELSI stands for Ethical, Legal and Social Issues. Ethical issues concern what is morally correct and good in the world, legal issues talk about how the law should protect the public's rights and social issues outline how ALL of society will be affected by events.

     The HGP is often called the cure for many genetic diseases, because now they can use its information for treatment in medical care. However, there are many questions raised about the information it produces, such as...
1) How should the new information from the HGP be interpreted and used?
2) Who should have access to this knowledge?
3) How can people be protected from the potentially dangerous effects of information abuse?

To address issues like these, the ELSI Program was established in 1990 as a core component of the HGP. This program ensured that potential ethical problems could be resolved as early as possible, before the information was placed into medical applications. These potential ethical problems included:

Privacy of genetic information - it is unjust for medics (e.g. GPs, nurses, etc.) to disclose confidential genetic information (i.e. information about that person's genes and any abnormalities they might have) to anyone other than the individual themselves. However, in the USA some life/health insurance companies demand genetic information to base their policies on.

Fairness in its use by the public - schools, employers and insurance companies must be sensitive to the genetic information and must not unfairly judge individuals based on their genetic status. Some employers (e.g. the armed forces) may not employ an individual whose parent(s) has a genetic condition they may inherit (that would affect their work), even if they show no symptoms of it. This is called "genetic discrimination".

Gene patenting - the issues surrounding the legal procedure of claiming "ownership" of a particular gene or region of DNA. Is it possible to own something that is present in all humans - is a gene present in an individual theirs or does it belong to the person who discovered it?

Genetic testing of adults, children and foetuses - the different methods of genetic testing for each type of individual raises different questions, such as "do parents have a right to screen a child for a disease if the result may affect the child's mental well-being?" and "does the child have a right to deny testing even if the parents want it carried out?"

Human reproductive choices and responsibility - such as the uncertain border between enhancements in gene therapy that are either needed to survive or improve their life. Does "improving" someone's life include disease symptom reduction or cosmetic improvement (e.g. changing skin colour)?

Psychological issues - those specifically associated with being diagnosed with a particular gene... the fact that a 20 year old individual finds out they are unlikely to live past the age of 30 may cause a dramatic psychological response, such as anxiety or depression.

     Currently, the National Human Genome Research Institute (NHGRI) is the main sponsor of the ELSI program and pays over $14-million each year to continue the research. The NHGRI guidelines are similar to those in ELSI, but are set into four areas of focus:

Privacy and equality of genetic data - this program looks into what certain genetic information means as well as stopping information abuse or misinterpretation.

New techniques in medicine - this looks at the effects of genetic testing on individuals, families and reports the latest results to medical services.

Genetic research issues - this area focuses on ethical issues such as "informed consent" (written permission from the person being treated) and analyses genetic researchers' aims, methods, and reports of their results.

Education - this provides ordinary people with knowledge on genetics and relates ELSI issues to health professionals, policy makers and the general public.

     As long as the HGP information is being used in medical applications, ELSI will continue to play a large part in preparing that information with guidelines for use on the public and how to prevent abuse of that knowledge.

 

Go to the Links & References page for further reading on this area.