GENETIC PRIVACY

Introduction

The power and potential of genetics rests in the knowledge it provides, thereby raising concerns about privacy and confidentiality in a wide range of situations. The information gained from increased genetic knowledge will be of great interest to the affected individuals as well as to others, including, for example, family members, employers, schools, insurers and legal institutions.

Genetic privacy is destined to become the main constitutional issue of the next century. On June 26, 2000, The Human Genome Project, a public consortium, and Celera Genomics, a private company, jointly announced the completion of a "working draft of the human genome." Spelling out the 3 billion "letters" of the human genome--the biochemical messages encoded in our DNA for manufacturing and operating a complete human being--was hailed as one of the most important milestones of the century. The fact that science is on its way to deciphering the blueprint for what makes us human is at once wondrous and worrisome.

Wondrous because of the possibilities for fighting genetically triggered disease. Worrisome because, some feel, scientists are making it possible to look through the blinds of our private domain, enabling them to uncover secrets that many of us would prefer to keep to ourselves. Every human cell (hair, blood, fingernail parings and body tissue) carries a complete set of our genes. Consequently, genetic profiles won't be hard to come by yielding informations that may affect the way we view ourselves and how we are perceived by others.

The (personal) information contained within the genetic tissue is more important than the tissue, itself. While less important than the personal information it contains, genetic tissue has value to many people because "it is mine." A straightforward expression of the concept of genetic property comes easily to mind when people are asked about genetic tissue in research and development. Confidentiality is no substitute for the informed consent of the individuals whose DNA tissue researchers wish to study. That is, informed consent is seen as a strong and important way for individuals to exercise their privacy rights. A survey of 30 opinion leaders in Oregon shows that more than 90 percent of them equate the deliberate and accidental release of information about a person's identity, and deliberately keeping tissue without informed consent, to behaviors that are described in Oregon law as felonies. That is, in the view of this sample of Oregonians, SB114 does not go nearly far enough in establishing the degree of punishment for the crime of violating an individual's genetic privacy or property rights.

More about genetic privacy

Genetic privacy is defined as the limited access to a person genetic information, the right to be left alone, and the right to keep certain information from disclosure to other individuals Although it will be more complicated than most people imagine, protecting genetic privacy and confidentiality is a worthy goal.

There are eight non-medical uses of genetic information: insurance, employment, criminal law, personal-injury litigation, domestic relations, forensics, education, and commerce. Data also are being used for identification and in such contexts as immigration, paternity, settlement of estates, kinship, and schools.

Because of the financial incentives involved, confidentiality is particularly difficult to maintain in health insurance and employment. Companies are finding ways by which greater amount of money can be saved to make larger profits possible.

Regarding insurance discrimination, if insurance companies were to attain genetic information, they would then deny courage for having genetics information enables them to see that the client would most probably have a disease. Another way would be raising health insurance rates to make sure that they benefit form the deal instead of making a loss. To prevent insurance discriminations, laws have been enacted to prohibit insurance companies from using genetic information to deny coverage or raise health insurance rates.

In many countries, insurers have the legal right to question insurees about their genetic testing. Acting on the information that they received, a person who makes false statements may find themselves accused of fraud and may thereby jeopardize insurance. However by allowing insurance companies access to genetic testings information, they would then reply on it to make decisions of the approval as well as the insurance rates.

On employment discrimination, genetic informations as well as health record should be protected from employers. This is because by having genetic informations on its his/her staffs, some employers feel that they can save a great deal of money by eliminating prospective employees and dependents whose medical expenses are likely to be high taking evidence from the genetic information. For certain countries whereby the employers have to right to question people about their genetic testing informations, it is then used to decide on who to employ.

There have been documented cases where people have lost their health insurance once the results of a genetic test became known. Surveys show that a substantial number of people are refusing to take genetic tests at least partly out of fear that they may lose their health insurance coverage if the results show that they have a genetic problem. In an attempt to quell such anxiety, 37 states have passed laws limiting insurers' access to various types of genetic information

Mark Hall, a law professor at Wake Forest University, points out that genetic testing brings two different conceptions of "fairness" into conflict. Many people, agrees on the statement made by Hall, "it is fundamentally unfair and morally wrong to penalize people due to their bad luck in the genetic lottery." But many people also believe that it's not fair "to charge the genetically advantaged more for their insurance in order to lower costs for the genetically disadvantaged." After all, Hall says that "the advantaged are not responsible for the disadvantaged's misfortune."

This much is certain: The business of insurance requires that underwriters accurately assess the risks that they are insuring against. That's the only way they can charge the proper premiums to cover the payoffs that they must make to the people they insure. Clearly, predictive information from increasingly accurate genetic tests is relevant to assessing risks. Yet two-thirds of states have made it difficult, if not downright impossible, to do so.

Preventing insurance companies from gaining access to the information provided by genetic tests leads to the problem of adverse selection. Adverse selection occurs when there is an asymmetry of information. In this case, people whose genetic tests indicate that they are at high risk of becoming ill or dying prematurely are likely to load up on gold-plated insurance coverage. Because insurers won't know the results of the tests, the premiums they charge will not cover the cost of taking care of high-risk customers.