Authors

  1. Blackburn, Susan PhD, RN, C, FAAN

Article Content

This column describes selected Internet resources related to bioethics, particularly those focusing on issues engendered by advances in genetics, as well as more generic sites. Addresses for the sites discussed are listed in the accompanying box.

 

The Humans Genome Project, which was completed in 2003, included a focus on identifying and studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. The issues identified and research summaries and resources developed as a part of this project are linked on the site. Another resource is an online booklet titled Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research. Although developed in 1999, the content is still pertinent. The booklet presents 8 scenarios followed by discussion of issues raised. The scenarios make good starting points for group discussion. The booklet is also available as a PDF file that can be downloaded.

 

Gene(sis): Contemporary Art Explores Human Genetics is a site based on a traveling art exhibit, developed by the Henri Art Gallery at the University of Washington to explore potential social, emotional, or ethical implications of the human genome project. The art works described and pictured on the Web site illustrate and explore issues, controversies, and questions brought about by scientific advancements in this field. Four general themes have been explored: (1) sequence (focusing on DNA and the genetic code); (2) boundary (issues related to interspecies similarities and differences); (3) specimen (DNA ownership, privacy, and use of genetic information); and (4) subject (implications for individuals and families). The art and descriptions are a novel way to stimulate discussion about the ethical and societal implications of genetics.

 

Genetics and Your Practice is an online module developed by the March of Dimes. This is an excellent general resource on clinical genetics and includes discussion of financial, ethical, legal, and social issues across healthcare specialties. Issues discussed include confidentiality, discrimination, informed consent, justice, autonomy, and privacy. Users must register to enter the site, but registration is free.

 

Case Studies in Science from the National Center for Case Study Teaching in Science, hosted by the State University of New York and Buffalo, is a compilation of cases related to all areas of science, including health, medicine, and genetics. The case studies range from those suitable for a beginner to more complex studies. Although most of the studies do not relate to either healthcare or ethical issues per se, several do, including cases related to genetics issues and artificial reproductive technologies. Some studies are directed toward beginners, while others are more complex. Included with each case are teaching notes from the case study developer. Instructions are given as to how the studies may be used and when permissions are need for reproduction. Teaching notes cannot be reproduced.

 

Codes of Ethics, developed by general and specialty nursing associations and organizations, as well as statements related to ethical implications of health policy and clinical practice are generally available for download or purchase on the organization's Web site. These can be found by searching the site of the individual organization. Articles on ethical issues can be found online, although access to articles found by Medline/PubMed or CINAHL (Cumulative Index to Nursing and Allied Health Literature) searches will vary with online subscriptions available at each institution. Some articles are available online to all, such as Ethical Issues in Neonatal Intensive Care by Brian S. Carter from E-Medicine Journal

 

There are many general bioethics sites on the Web. Three examples of these that provide links to a variety of other ethics-related sites are described below.

 

Bioethics Resources on the Web from the National Institutes of Health (NIH) is a compilation of annotated Web links to a variety of sites related to bioethics topics. Major sponsors of the site are the NIH Office of Extramural Research and Inter-Institute Bioethics Interest Group, with additional support from the National Institute on Aging and the Office of Biobehavioral and Social Sciences Research. The content is general, that is, not specific for perinatal and neonatal nursing. Areas included are links to NIH-related bioethics sites, including tutorials on informed consent and human subjects protection, research ethics, genetics, and organizations. Also included are links to recent ethics-related news.

 

The National Reference Center for Bioethical Literature at the Kennedy Institute of Ethics at Georgetown University develops references lists on ethics topics. Those that are currently available include lists focusing on a variety of genetic issues and stem cell research. This site also includes links to other bioethics resources similar to the NIH site. http://Biethics.net from the American Journal of Bioethics is an online journal that includes resource pages, with links to a variety of bioethics topics, tutorials, organizations, policy statements, journals, and discussion lists. Also included are links to the editor's blog and a general bioethics discussion forum. Again, a broad range of topics are discussed, only occasionally focusing specifically on those related to perinatal and neonatal nursing.

 

If you have additional suggestions of recommended Internet resources or other teaching resources relating to ethical issues for inclusion in a subsequent column, please send them to stb024@yahoo.com.

  
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Susan Blackburn, PhD, RN, C, FAAN

 

Professor, Department of Family and Child Nursing, University of Washington, Seattle, Wash