TMN
      Vol.1 Number 2,  Spring 2004  

Technology Management Newsletter - Vol.1- No. 2 - Spring 2004

by Halime Inceler Sarihan

People dream of a life without disease and sickness. I think biochip is very promising technology for increasing human quality of life. There a lot of biochip applications range from detecting mutations in cancers, AIDS, cardiovascular diseases, Alzheimer's disease, diabetes, hypertension, schizophrenia,  and manic depression etc. However, there is a lot of ethical issues concerning
 the use of biochip technology mostly related with genetic testing such as privacy discrimination in workplace, insurance and eugenics.  

Using biochip in genetic testing raises a lot of questions for each individual such as who should 
have access to personal genetic information, and how will it be used? Who owns and controls genetic information? How we can protect our genetic privacy? How we can protect ourselves from adverse affect of genetic testing?

Generally, all information obtained through genetic testing is strictly confidential. According to guidelines for genetic testing, test results should not be disclosed to anyone other than the individual who was tested, unless that individual gives his/ her written consent. Some research 
has been done by different academic institutions about  the issues confidentiality and genetic testing.

 The American Medical Association has had some discussion about genetic information and 
degree of confidentiality issue. “Many people insist that when it comes to issues of consent and confidentiality, genetic information is different. There are two main reasons for thinking so. First, genetic information, and most especially DNA test results, can reveal more than an ordinary 
medical record; it can indicate illnesses (breast or colon cancer, for example) and risk conditions (high cholesterol, e.g.) that we might develop in the future. Such information could prejudice insurance companies and employers and could influence one’s educational, reproductive, and 
other lifestyle decisions. The second distinct characteristic of genetic information that complicates standard consent guidelines for physicians is that data obtained about a patient may apply not 
only to that patient but also to other members of his or her biological family. Such information 
has, thus, been acquired about that family member without his or her consent and may be 
unknown to (and perhaps unwanted by) him or her.” (AMA, 2003)

Genetic information is considered to be private and linked to a person’s identity. The private genetic information should not be used in an unethical manner. If genetic privacy is not maintained, genetic discrimination may occur. Using genetic information by employment organizations and insurance agencies can cause serious ethical issues in the public level. Therefore solving public level problems is very important for biochip industry. Because of ethical problems people are not willing to use biochips for genetic testing.

 National Human Genome Research Institute (NHGRI) Director Francis Collins emphasized importance of discrimination issue in his testimony and Senate hearing  in July, 2000. “Genetic information can be used as the basis for insidious discrimination. Already, with but a handful of genetic tests in common use, people have lost their jobs, lost their health insurance, and lost their economic well being due to the unfair and inappropriate use of genetic information. It is estimated that all of us carry dozens of glitches in our DNA -- so establishing principles of fair use of this information is important for all of us. The misuse of genetic information has the potential to be a very serious problem, both in terms of people's access to employment and health insurance and the continued ability to undertake important genetic research”(Collins, 2000).

I think genetic testing and gene-based therapies must be voluntary informed consent and confidentiality are crucial to the voluntary participation of any individual in medical research, and 
in general, the usual guidelines are also applicable to participation in large-scale genetic 
association studies. Insurance providers and employers should be prohibited from using genetic information, There is already an urgent need for different forms of insurance for those with difficult medical conditions. We can overcome all these ethical issues by putting in place clear ethical principles and  rules both in individual and public level.

References:

American Medical Association “Genetic Information and the Criminal Justice System.” http://www.ama-assn.org/ama/pub/category/8437.html>

Collins, Francis ” Testimony from 2000 Senate hearing on genetic information in the workplace”, July 2000

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