Diagnosing and Treating Genetic Diseases
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Scientists have dealt with the ethical issues of genetic research since they started their investigations. The first issue they addressed was the safety of the research itself. At an international meeting in 1975, they agreed that strict biological and physical safeguards should be developed. In 1976, NIH released specific safety guidelines created with public input. In this 1976 photo, Dr. DeWitt Stetten, Jr., Deputy Director for Science at NIH, chaired the Recombinant DNA Advisory Committee, which drafted guidelines for scientists using the new techniques.

Photo of Asilomar meeting - Collection of the DeWitt Stetten, Jr., Museum of Medical Research

Asilomar meeting. Courtesy of the DeWitt Stetten, Jr., Museum of Medical Research
Photo 
  of BL4 equipment - Collection of the DeWitt Stetten, Jr., Museum of Medical Research

BL4 Equipment. Courtesy of the DeWitt Stetten, Jr., Museum of Medical Research
  For example, host bacteria used in recombinant DNA experiments must not be able to survive outside the lab. Scientists worldwide follow the NIH rules. At NIH, the 70-foot cabinets of a biological level (BL) 4 facility physically "contained" genetic experiments with the most secure equipment available to protect the environment. Workers used rubber gloves to handle items, which entered and exited the double-tiered system through sterilizing autoclaves.

In 1979 Drs. Wallace Rowe, Malcolm Martin, and their colleagues of the National Institute of Allergy and Infectious Diseases showed that such physical containment was unnecessary to protect the escape of genetically altered organisms.  Instead, biological containment strategies proved sufficient. Currently, several oversight committees and agencies regulate DNA and gene therapy procedures and experiments.

Genetic research also includes the study of ethical issues. For example, a component of the Human Genome Project called Ethical, Legal, and Social Implications (ELSI) strives to stimulate public and professional understanding and discussion, and to develop policy options based on social and cultural considerations.

But the most important voice is yours. As the revolution in genetic research leads to tests for and prevention of genetic diseases -- and possibly even cures -- it will be the public’s decision how to balance the needs of individuals with the good of society as a whole.

You are part of the revolution!
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Revolution in Progress: Human Genetics and Medical Research/
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