Penn prof. discusses confidentiality
By Heather Szilagyi
Published on Thursday, April 5, 2012
The future of medical privacy is uncertain, but confidentiality and privacy remain important aspects of the health care system that should be protected, according to University of Pennsylvania law and philosophy professor Anita Allen, the College’s current Dorsett Fellow and a member of President Barack Obama’s Presidential Bioethics Commission. Allen discussed issues surrounding health privacy in a world dominated by increased sharing of personal information and use of social networking websites on Wednesday in a crowded Filene Auditorium.
In her lecture — titled “Privacy in an Era of Revelation and Social Media: Goodbye to Health Privacy?” — Allen explained today’s “era of revelation” and the idea that many people are losing their own sense of privacy and a respect for the privacy of others. Allen said that this phenomenon is a result of modern technologies such as telephones, computers, social networking and consumer websites and the attractions they hold in today’s world. People are often so impressed by technology’s capabilities that they “put their privacy concerns in the background,” she said.
Modern day examples of this trend include the recent case of Tyler Clementi, a Rutgers University student who committed suicide after his roommate recorded a video of a private intimate encounter, and the 2010 WikiLeaks scandal in which Army intelligence analyst Bradley Manning leaked thousands of sensitive documents, Allen said. Many people were not appalled by the WikiLeaks incident because “they felt there was no legitimate expectation of privacy, confidentiality or security in diplomatic messages,” or because they believed there was an inherent social good in the work of WikiLeaks, Allen said.
Allen said that the fate of medical and health privacy and confidentiality is of special concern.
“Everyone who participates in the field of health care has an obligation to confidentiality,” she said.
Privacy is important in the field of bioethics, but confidentiality in health care is also enshrined in federal laws such as the Health Insurance Portability and Accountability Act of 1996, Allen said. This law created a set of privacy and data security rules that “provide a national framework for protecting health information,” according to Allen. Under HIPAA, patient consent is required before health practitioners can release certain records. One of HIPAA’s limitations, however, is that individuals cannot file a lawsuit under the law and can only file a complaint with the Department of Health and Human Services. HIPAA also does not prevent the release of information without consent in all cases, including for research and law enforcement use, she said.
Allen said that confidentiality and privacy are important, both from a utilitarian standpoint and a concern for individual rights. People will be more likely to seek medical attention and speak about potentially embarrassing matters if they believe their privacy will be protected in the health sector, Allen said. This ultimately reduces costs, with people seeking primary care more quickly and therefore utilizing emergency rooms less frequently, she said.
Individual rights and personal dignity also demand a right to privacy, Allen said. While she said she “doesn’t particularly like this argument,” a legal argument for privacy exists that says because people purchase health care, they have also bought their confidentiality, Allen said.
As a result, people should strive to retain their medical privacy “even as our culture becomes more open about health care matters,” she said.
While she did not identify the single biggest threat to health privacy, Allen explained through examples what she sees as main threats to modern medical privacy. Medical professionals’ lack of adherence to HIPAA is especially problematic. Health care practitioners sometimes believe that there are “exceptions to the rules,” such as sharing information with friends and family. The Department of Health and Human Services, however, is becoming tougher on imposing fines on violators of the law, and Allen said she is “really proud of what’s happening with DHHS today.”
Data breaches and loss of patient information have plagued hospitals and also pose a serious threat to patient privacy, according to Allen. Data miners, who are legally allowed to access health data without the assurance that it will not cause harm to patients, can also cause privacy concerns.
Liz Ballantyne ’12, a public policy minor focusing on health, said that while she expected the lecture to be more about new age technologies such as genomic testing and its application in health insurance, she thought the “day-to-day” focus of the lecture was valuable and highlighted important, ethically unclear areas.
Philosophy professor Susan Brison called the topic “timely” in the age of social media and “changing views of privacy.” The lecture was sponsored by the Ethics Institute.