EMERGING ETHICAL DILEMMA IN HEALTHCARE

Emerging Ethical Dilemma in Healthcare

Emerging Ethical Dilemma in Healthcare

The complete sequencing of the human genome in 2003 brings with it new approaches to the diagnosis and treatment of rare and common diseases. As noted in the November 2005 Genomic National Human Genome Research Policy Roundtable Summary:

Genomic medicine is a powerful way to tailor health care at the individual level by using patients' genomic information. By identifying the genetic factors associated with disease, it is possible to design more effective drugs; to prescribe the best treatment for each patient; to identify and monitor individuals at high risk from disease; and to avoid adverse drug reactions (National Human Genome Research Institute, 2005).

One of the National Human Genome Research goals therefore is to “enhance health care through the integration of genomic medicine into mainstream medical practice” (National Human Genome Research Institute, 2005).

New genomic discoveries and their applications bring great hope for a more personalized approach to treat disease. The field of genetics, until recently, has focused on rare, single-gene diseases, such as muscular dystrophy. However, a new field of research, called genomics, which is the “study of all the genes in the human genome together, including their interactions with each other, the environment, and the influence of other psychosocial and cultural factors” (American Nurses Association, 2006 p. 9) has emerged. Genetics has evolved to encompass the impact of a person's entire genome, environmental factors, and their combined effects on health. This evolution is creating new, gene-based technologies for the screening, prevention, diagnosis, and treatment of both rare and common diseases, such as cancer, diabetes, heart disease, and stroke. New genomic discoveries and their applications bring great hope for a more personalized approach to treat disease. This new approach is called “personalized medicine.” Clinicians are beginning to move away from the “one size fits all” approach to diagnosis and treatment of common and rare diseases (National Human Genome Research Institute, 2007).

Although these new directions raise hopes for disease prevention and treatment, they also bring challenging ethical issues to patients and healthcare providers alike (See Table 1). The United States (U.S.) National Institutes of Health (NIH) and the U.S. Department of Energy (DOE) recognized the potential for ethical challenges in genetic and genomic research early on. They had the foresight to devote 3% - 5% of their annual Human Genome Project (HGP) budget towards studying the ethical, legal, and social issues (ELSI) related to the availability of genetic information. This is the world's largest bioethics program, and it has become a model for ELSI programs worldwide (National Human Genome Research Institute, 2007). Table 2 presents ELSI research areas identified as “grand challenges” for the future of genomic research.

 

Table 1. Ethical Challenges for Nurses: Seeds for Thought

Privacy and Confidentiality

Who should have access to genetic information? Who owns and controls it?

How can families resolve conflicts when some members want to be tested for a genetic disorder and others do not?

Discrimination

Should employers be able to require job applicants to ...