Privacy, Safety, and Genetics: Finding the Balance.
Fam Syst & Health 17:45-47, 1999
National policy regarding genetic testing should be about protection, safety and balance.
It is one thing to appropriate funds to build new highways and reauthorize agencies such as the Federal Aviation Agency and the Environmental Protection Agency that help Americans live their lives safely and conveniently. These are known entities. We know their track record. Their function is obvious. There are few unintended consequences about which we should worry. And, while each of these requires a certain amount of annual negotiation between competing interests, resolution of differences is relatively easy.
None of these descriptions applies to the new world of genetic testing and the corresponding issues of privacy and safety for individuals and families. As we move forward with the Human Genome Project and as government-sponsored and private sector research pushes back the borders of our knowledge to reveal fascinating new knowledge, we stand in awe--and apprehension. We are challenged to find and protect a balance between what becomes known about an individual's genetic composition and what public access to this knowledge might mean to this individual and his or her family.
Information is a key aspect of health and healthcare. For example, individuals and families can benefit from knowing the roles that behavior and lifestyle play in our health. As studies confirm how often premature death, disease and disability is related to tobacco and alcohol use, a sedentary lifestyle, poor diet, violence and firearms, we can build on this knowledge and take steps toward our best possible level of health. We can decide not to smoke. We can come together as communities and confront violence in our neighborhoods.
As healthcare professionals receive data about their own practice patterns, they can allow information to shape their clinical decision-making to provide value-based care, without the interference of third parties looking too closely over their shoulders. As health plans and insurers receive information about the prevalence and incidence of disease and disability in their covered lives, they make their budgetary adjustments and decide their priorities.
However, the nature and possible implications of information about one's own genetic code is in a category by itself-one that is entirely new territory for us. This is not simply data. It is information with deep, personal significance. It makes known what has always been and assumed, to unknown and potentially changes the way we lead our lives. Several articles in this journal have considered the clinical and public health implications of this new knowledge. This is an important conversation. Many are aware of and sensitive to the ethical, legal, and social implications of this research and emerging body of knowledge. The Human Genome Project has set aside 5% of its research budget to ensure that new abilities to read and interpret genetic information are used to help, not harm, people. There are currently six bills in the U.S. Congress that attempt to address the possible conflicts and need for balance between privacy and access to information that arise with the growth of genetic knowledge. Law professors such as Karen Rothenberg at the University of Maryland are contributing to thoughtful scholarship on genetic testing.
We view this issue as critical-both on its own terms as well as how it relates to larger themes of privacy and protection in the Information Age, fueled by our explosive growth in technology. Much of the story about how genetic information is used will be written quietly--within the quiet of the clinical office as test results are disclosed and people are helped to understand and absorb them. It will happen as parents sit together at the kitchen table to cry, rejoice, talk, and plan. It will be written as many people find new courage and resilience in themselves and those they love to live with knowledge that alters their life dreams. Many will experience enormous relief as they are given good news. Others will feel devastated and be challenged to find new meaning in their lives.
This is the human level of the wonders of the genetic revolution. And, as always, national policy should be built on these human stories. We should welcome the advent of new technologies and new knowledge, but always put them immediately into a human context.
There should be four elements to national policy regarding genetic testing: balance, fairness, support, and public education.
What exactly needs to be balanced? Two examples come quickly to mind: the individual right to privacy and protection from discrimination with the scientific goals to push further into this frontier-and, the rights of private sector interests to turn their entrepreneurial spirit into profitable goods and services with the public's need for quality assurance and equal access to new tools, often best assured by government. These are embedded in the larger context created by how rapidly and easily we have access to information about one another these days. It can be financial information, purchasing patterns, medical and legal records, e-mail transmissions, or telephone conversations. What we have always assumed to be private is now at risk for invasion, even snooping. Ethics and sensitivity must govern our individual actions as much as our national actions.
What does fairness mean? Gender, race, age, and ethnicity have often meant unequal treatment and opportunity. The possibilities for misuse of genetic information on an individual level regarding employment and insurance benefits are substantial. The possibilities for such misuse to play out unequally across different groups is real. This, we must stand guard against.
Should we support genetic testing and projects such as the Human Genome Project? Certainly, we should. We are committed to good science. It is the foundation for our models of health and healthcare. It is much of how we life longer and better lives. It is how we find cures or new ways to cope with infirmity or distress. As much as knowledge of one's own genetic vulnerability may be deeply disturbing, it can also bring a new measure of control to one's life. Knowledge can guide one's way, even if the way is uncomfortable and unbidden.
And, finally, why is public education important? Broad access to genetic testing will be confusing to the public. They will need to know: why is genetic testing useful? What will it reveal? How will I and my family manage this information? Who else will know? What are my rights and responsibilities? What are my choices? To whom should I turn for accurate information and truly good care?
America has always been about exploration, pushing back boundaries. Now, as the mysteries of our genetic makeup are explained, we have a new opportunity to blend compassion with enterprise and privacy with information. It is important to keep our eyes on the children, mothers and fathers, workers, healthy and ill who can be helped, or harmed, by the science and technology of genetics.
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|Publication:||Families, Systems & Health|
|Date:||Mar 22, 1999|
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