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Philosophy Professor DeCew seeks solutions to resolve the conflict between the need for personal privacy and the increasing use of computers to store medical information. In her philosophy of law course, students like Abigail Rollings choose a legal case to research, analyze and present to the class. Other students are representing Clark at a local philosophy conference. |
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Exposing yourself
Professor Judith DeCew's research
John has finally kicked his IV drug habit, and has held a steady job for two years. But he's worried that he might be HIV positive.* John would like to be tested, but he's afraid that his medical information might be stored in an insecure computer database. He can't take the chance that, if he's HIV-positive, his employer might find out.
Public health officials want John, and others like him, to come forward for testing. They need information about HIV-positive people to control the spread of the disease, and the easiest way to store that information is in computer databases that facilitate efficient maintenance and analysis. They understand John's desire to have his medical information remain private, but are not sure how they can guarantee confidentiality, while at the same time fulfill their mandate to protect public health.
Philosophy professor Judith DeCew explores solutions for the kinds of dilemmas illustrated by John's situation. Much of DeCew's research centers on trying to resolve the conflict between the need for personal privacy and the potential threat to that privacy arising from the increasing use of computers to store medical information.
The need for medical privacy
Do you want your physical and mental health history shared with strangers? Routinely, sensitive personal medical information is now maintained in large computer databases. Many Americans worry that such information might be accessible, not just to their doctors, but to government agencies, insurance companies, and employers. Those who suffer from chronic physical problems, mental illness or certain infectious diseases are all too aware of how inappropriate disclosure of their health status can lead to discrimination. People who undergo genetic testing for predisposition to a wide range of illnesses, from breast cancer to Alzheimer's disease, fear that that they might be denied insurance coverage or pay inflated premiums if the test results are positive.** While privacy of medical information is widely desired by individuals, electronic database security is often inadequate and regulations governing privacy are inconsistent.
The need for computer technology
While DeCew upholds the importance of personal privacy, she also acknowledges the important benefits that computer technology provides. Computers are an excellent medium for storing and maintaining vast amounts of data, as well as providing the tools researchers need for analyzing that data.
Reconciling privacy and technology
DeCew suggests that carefully thought out, federally-mandated regulations, combined with a process of informed consent, may provide a way to safeguard the privacy of medical information stored in computer databases, while at the same time making needed data available for medical research and other legitimate purposes. In reaching this conclusion, DeCew reviewed computer security alternatives, strategies and policies suggested to insure the privacy of medical information.
DeCew noted that some people favor the establishment of a national, centralized medical database maintained by the federal government. Supporters claim that the benefits of a centralized system would include opportunities for quality control, the monitoring of medical fraud and abuses, lower health costs, abundant data for medical and public health research, increased convenience for patients changing addresses, and screening of conflicting patient care therapies. Individuals would be able to access their own records.
Opponents counter that government maintenance of medical records would lead to the invasion of personal privacy and bigger government. Instead, they suggest that issues of privacy should be dealt with by the private sector. Businesses and organizations maintaining medical databases should, in cooperation with consumers, develop codes of conduct and establish enforcement agencies to monitor compliance.
DeCew's solution, which she calls "dynamic negotiation," proposes that a system of federal guidelines be established and applied to the maintenance of all private and public medical databases. Such guidelines would mandate the priority of medical record privacy as the default and govern built-in security measures and access. The individual (or, in certain circumstances, another "gatekeeper") would determine who has access to his or her medical information. Other persons or organizations wanting access would be required to present a case justifying their need for that information and informing the individual of the risks and benefits of disclosure. Not only would individuals have access to their own medical records, but a procedure would be in place for the correction of erroneous information. A centralized privacy policy would make consistent the patchwork of conflicting state and regional guidelines. DeCew believes that a sufficient number of people would be willing to make their information available to meet the needs of legitimate medical and public health research.
Why is privacy so important?
DeCew points out that privacy provides an individual with freedom and independence by allowing him or her protection from the judgment of others, pressure to conform and exploitation. When people think their privacy is at risk, they feel very vulnerable.
Why is it important to have medical records easily accessible?
- To insure the best possible health care. Today's patients are often treated by a team of health care providers, some of whom may be consulted via remote access. In order to insure prompt, effective treatment, all members of the team need rapid access to the patient's medical records.
- To supply real-life data for medical research. Health researchers frequently need information about hundreds of patients to investigate various medical problems.
- To help in the study of public health issues. Public health agencies need access to individual medical histories to track the spread of communicable diseases and monitor other threats to public health.
Why does the digital storage of medical records make that information vulnerable?
Computers are complex systems, and that complexity makes it difficult to guarantee security. Stories are often in the news about computer databases whose security has been breached by hackers . Sometimes data is inadequately protected, or not protected it all. A password system helps, but does not prevent authorized persons from abusing their data-access privileges. Data can be intercepted when transmitted via a local network, the internet, or email.
* For information about the politics of HIV/AIDs, go to philosophy professor Patrick Derr's Research and Active Learning pages.
** The 1996 Health Insurance Portability and Accountability Act (HR 3103) is supposed to protect people from being denied health insurance on the basis of pre-existing conditions. However, it is not always enforced.
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Additional Resources
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Patients expect that what they tell their doctor will remain confidential. |
How secure is electronically stored medical information? |
The pharma- ceutical industry is an example of a private sector business that wants access to private medical information.
Bottom two images courtesy of: www.freeimages.co.uk
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