Since the discovery of the DNA molecule in 1952, scientists have been working to understand how it works and which segments influence which parts or functions of the body. The Human Genome Project, begun in October 1990, hopes to identify these segments. Once the "normal" genetic sequences are identified, scientists work to find mutations that result in genetic disorders. A number of these mutations have been found and tests are being developed to help identify individuals carrying these mutations. This new technology is bringing with it a host of new legal and ethical dilemmas. These issues include potential discrimination, rights to privacy, and issues involving the parent / child relationship.
At present, most genetic testing will not improve the quality of life and may result in harm. For now, genetic testing can be used to help diagnose certain diseases, like Huntington's disease and Cystic fibrosis, but in most cases there is no cure available and little that can be done to treat these diseases. Genetic testing is also used in criminal investigations. When it helps to identify a rapist or murderer, that is a benefit to society, but when testing is forced on a large group of innocent people to try to identify the criminal among them, it violates the right to privacy of the many innocent people in the group. When genetic testing can lead to a cure, or be used to identify the guilty without invading the privacy of the innocent, then it can be used effectively. Until then, genetic testing should only be used with utmost caution.
Genetic testing can lead to discrimination. Insurance companies hope to use the results of genetic tests to categorize people based on their risk of developing a disease. This would result in some people having to pay high premiums, or being denied coverage entirely, based on information that may never come to pass and supposed risk factors that they have no control over. In business, companies could use this information to deny employment and in fact has.
The American Management Association conducted a survey in 1997 that found that 6 to 10 percent of the 6, 000 companies in their sample used genetic testing for employment purposes. There are also over 200 cases documented by the Council for Responsible Genetics where either insurance or jobs were denied to healthy people based on the outcome of genetic tests (National Commission). Besides discrimination, there are also privacy issues that relate to genetic testing. There is the issue of doctor / patient confidentiality.
Is a doctor obligated to inform a patient's family if a serious genetic disorder is found, so that other at risk members can be tested? Or should he respect the patient's right to privacy and keep the information confidential? This is mainly an ethical question, but it also has legal ramifications since the doctor / patient relationship is regulated by a code of conduct (Fou bister). Another issue of privacy is in law enforcement. Several states currently allow or even mandate genetic testing for all people arrested for crimes, including juvenile offenders, regardless of whether or not there is a conviction in the case. Often times the blood samples themselves are stored and not just the identifying information, which means that others have access to more than just the identifying factors. There are also state statutes that allow the samples to be used in other ways, without the individual's consent (National Commission). These privacy issues must be addressed.
Parenting issues arise out of some aspects of genetic testing. Prenatal testing is a growing trend that brings with it several difficult ethical situations. There is the dilemma of whether or not to bring a baby into the world that may have serious medical problems either from the start, or sometime down the road. For those who believe that life begins at conception, the decision to end a pregnancy is equal to murder, but there have been cases where health insurers have refused to cover the medical needs of such a child, if he or she is brought into the world. For example, there was a case where an HMO told a woman whose unborn child tested positive for cystic fibrosis, that it would pay for an abortion, but if the baby was born it would not be covered under the family's medical plan (Berea no). Whether or not to test an older child for certain genetic disorders is another sometimes difficult parenting decision.
Requesting a child to be tested for adult onset diseases can have a variety of often-overlooked repercussions. Children are often unprepared to face or understand the results of such tests. They may not understand the difference between a risk and a certainty. Their self-esteem can be affected at a critical time in their emotional development. It may also alter the way the child is treated by other siblings or adults who see them as being more vulnerable or fragile. These are some serious things to consider before undergoing genetic testing (Points to Consider).
Overall, genetic testing poses some serious risks. There need to be laws put into place to hinder discrimination by insurance or in employment. The doctor / patient relationship needs some new guidelines that address the broader concerns of other family members at risk, yet preserves the patient's right to privacy. The issue of how and when genetic information can be collected for law enforcement and how it is to be stored must be addressed. Better counseling of parents that respects both the parent's beliefs and the child's needs is needed. Until these issues are addressed genetic testing poses too many risks to be useful for the majority of people..