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  >  Issue Briefs  >  Bioethics  >  Justice and the Problem of Patient Privacy: Federal Sequestration of Patient Records

Justice and the Problem of Patient Privacy: Federal Sequestration of Patient Records

Posted: September 28, 2012
By: Jennifer Kimball Watson, Be.L.
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Advances in science, medicine and information technology (as well as hacking and piracy) have complicated the maintaining of rightful patient privacy.  Sophisticated methods for securing and storing personal information, even down to an individual’s complete genetic blueprint, are fast becoming commonplace.And keeping cultural time is our oral fixation on the concept of “confidentiality.”

In line with the marked rise of stored personal information is the Obama administration’s aim to create, by sequestration, a federal patient data bank where medical records of individuals will be stored on federally funded Health Information Exchanges.  At an estimated cost of 29 billion taxpayer dollars and risk to personal privacy, we must also ask at what impact to doctor-patient “confidentiality” and to the right to maintain personal privacy?

Confidentiality statements (agreements, disclaimers, codes of practice) flood our snail and e mail boxes.  They invariably begin with the mantra, YOUR PRIVACY IS OUR FIRST CONCERN, and then enumerate the dozen or more ways that our personal information is not our own: our records may be handed on for billing, disease control, pharmaceutical research, demographic analysis, forensic investigations, credit reports, marketing studies, etc… data might even be sold.  In no traditional sense can personal medical records be understood to be owned by the patient.  The risks this poses are well known.  The 2009 Report of the Council on Ethical and Judicial Affairs of the American Medical Association claimed that medical identity theft is the “fastest growing form of identity theft,” citing that security breaches are “higher than ever before” due to “complex patterns of collecting and using patient information.” Where else is a person’s identity so completely recorded?

Although for practical purposes, we have less control of our personal medical data than we do of ordinary objects of ownership, it should be the other way around.  Medical data occupies a unique category of property.  Although it “belongs” to a patient, its manner of belonging is more closely connected to— more intimately of— its owner than the manner of such things as clothing, housing or food.   It “belongs” in the sense of constituting attributes of the owner.  A hat can be separated from its wearer.  But a diagnosis of manic depression, or eczema, or suicidal thoughts, or premature balding, is an inseparable (although not necessarily permanent) characteristic of a person.  Moreover, a hat can be replaced if lost or mishandled.  Although data can be re-collected if records are lost, the data’s content is enduring.  Consequently, the norm of respect for handling the personal information of others is stricter not loser than the norm governing how we should treat the material possessions of others.

We propose that personal medical data should be treated as an aspect of personal identity. The Pontifical Academy for Life defines personal identity as follows: “the relation of an individual’s unrepeatability and essential core to his being a person (ontological level) and feeling that he is a person (psychological level).”  The unique characteristics of personal identity are the unique characteristics of the person.  Those characteristics can be observed, itemized and recorded, which is what’s done when personal medical data is secured.  But the characteristics are still of the person.  The handling of personal records will in a morally relevant sense be the handling of the person, not of course ontologically handling them, as if they were physically present to us, but conceptually handling them, in the way we “handle others” when we think or speak well or ill of them.  So serious justice issues are at stake when dealing with the handling of personal medical information.  

Some personal facts are, as it were, placed in the public domain by an individual’s own behavior.  Clint Eastwood’s disdain for the sitting president, for example, was made public at the Republican National Convention.  Other facts however are never meant to be shared beyond very limited contexts.  A young professional woman suffering from dysthymia (chronic depression) may choose to share the fact with no one beyond her most intimate relations.  Her doctor ipso facto becomes one of those relations in virtue of the dynamics of the doctor-patient relationship.  That she shares it with her doctor, however, emphatically does not place it in the public domain, nor should a record of it ordinarily be seen by anyone’s eyes but her doctor’s (and authorized medical staff).  It is her information, not the clinic’s.  Its recording in electronic storage certainly does not change this.  Consequently, it should be guarded with a high degree of respect.  Confidentiality, properly understood, is a necessary expression of this respect. 

With what degree of confidentiality should personal medical data be held?  We offer the following thoughts on conceiving the norm of medical privacy.  If personal information is an aspect of personal identity; and persons cannot be coerced by public authority to certain ends without a high burden of proof that such ends are in the manifest interests of the common good; and if personal information is more our own even than material possessions, and the coercive securing of our material possessions by public authority (e.g., eminent domain seizures, taxation for the funding the social safety net) requires a high evidentiary standard that such seizure is required for the common good; then it seems reasonable to conclude that anybody, including public authorities, desiring access to one’s personal medical data should be required to demonstrate that such access is in the manifest interests of the patient or the common good.  The default position should be “no access” beyond one’s personal medical provider.

We do not think that the signing of “privacy policies” upon admission to clinics or hospitals ordinarily constitutes a sufficient expression of informed consent for the sharing of private information.  The Pontifical Academy for Life states: “the doctor has only that power and those rights which the patient himself gives him.”  We argue this includes the whole area of confidentiality.  Patients therefore should be given the opportunity to explicitly consent to each and every instance of the sharing of any personalized information; they should be made known in advance what pieces of information others want access to and supplied with details about who’s requesting access and why.  They should also be informed in advance that they have no obligation to grant access and their consent remains at all times revocable.  Again, the default position should be “no access.”  Public authorities would, of course, have the power to override confidentiality.  But ordinarily they should be required legally to demonstrate that overriding confidentiality in such and such an instance is demanded necessarily by the common good.   All practices of the collecting, recording, combing and transferring of a patient’s information should be transparent to the patient and his or her primary doctor.

This norm would not exclude doctors from seeking medical advice on patients from colleagues, but all identifying information on those patients should be excluded.  Moreover, medical clinics may make general information available for epidemiological purposes or census data, etc., but the information they release should remain strictly anonymous.

Failure to uphold a just norm of confidentiality subjects patients to unacceptable risks of harm to personal identity.  

 

* Special thanks to Steven Mosher of Population Research Institute and members of the 2nd International Patient Privacy Summit
 
(c) Culture of Life Foundation 2012.  Reproduction granted with attribution.
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At an estimated cost of 29 billion taxpayer dollars and risk to personal privacy, we must also ask what impact the federal patient data bank will have on doctor-patient “confidentiality” and to the right to maintain personal privacy ?
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About Jennifer Kimball Watson, Be.L.

jennifer_0Jennifer Kimball Watson joined Culture of Life Foundation as Executive Director in November of 2007. She is an Adjunct Professor of Bioethics at the Ave Maria School of Law in Naples, F.L.. Previous to her work with the Culture of Life Foundation Jennifer was a Wilbur Fellow of the Russell Kirk Center for Cultural Renewal located in Michigan. Jennifer earned a Licentiate in Bioethics from the Pontifical Athenaeum Regina Apostolorum School of Bioethics in Rome.  Her prior undergraduate studies were in International Administration and Government Policy at the Evergreen State College in Washington State.

Jennifer’s areas of specialization include Eugenics in Artificial Reproductive Technologies, Heterologous Adoption and Transfer of Embryos, The Womb in Reproductive Technologies, and the Role and Significance of The Medical Act. She interviews with National Conservative and Christian Radio Syndicates as well as several foreign and secular reporters. Jennifer has spoken on the dignity of women and women’s social issues to various audiences since 1999 and has spent several years in advocacy work with various international organizations in the field of life sciences. From 2000 to 2006 she recruited and coordinated grass-roots social policy efforts that consisted of a public and private sector network of professionals and academics in the fields of Bioethics, Law, Science, Psychology and Media from various countries of Europe, North and South America and Africa to analyze, research and respond to social issues in bilateral and multilateral venues.

Jennifer was Executive Staff Member and International Project Assistant to the Secretary of State of the State of Washington from 1997 to 2000 where she chaired a Host Committee for the third ministerial conference of the World Trade Organization held in Seattle. She also served as research analyst and logistics coordinator for trade and development between the Russia Far East, China and North Korea facilitated by the office of the Secretary of State of the State of Washington jointly with multi-lateral organizations. Jennifer resides in Virginia with her loving husband. jennifer@culture-of-life.org

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