Residual Dried Blood and New Born Screening in Minnesota

Note: The Bioethics Program blog is moving to its new home on April 1, 2015. Be sure to change your bookmarks to

by Courtney Jarboe, Bioethics Program Student

In Minnesota, residual dried blood (RDB) samples collected for newborn screening had been stored, retained, and used for research without parental consent. It had been presumed that the Minnesota Department of Health (MDH) had the statutory authority to do so. In 2011, the Minnesota Supreme Court ruled (in the case of Bearder v. Minnesota) that the newborn screening program was subject to the Genetic Privacy Act (2006) (pdf), which requires written consent for secondary uses of genetic information. This ruling led to revisions of newborn screening legislation and the destruction of 1.1 million newborn screening RDB samples. Since the legislative dust has settled, MDH has begun aggressive educational campaigns to rebuild trust and awareness between parents and healthcare providers in Minnesota and address information gaps in the public’s understanding of the newborn screening program and the associated research.

In February of this year, I received a letter from the Citizen’s Council for Health Freedom (CCHF), an organization that actively supported the nine families in Bearder v. Minnesota who sued to stop the use of RDB samples for research. (see image) The letter details CCHF’s concerns about the MDH newborn screening program. The letter also suggests that MDH can use the RDB and the associated child’s DNA without parent consent. Included with the letter were a letter addressed to MDH and a copy of the MDH ‘Directive to Destroy’ form.

CCHF disclosed in late March that they distributed the letter to roughly 10,000 parents across the state based on birth certificate records. Within just a week of CCHF’s distribution of the letter, MDH received 59 directives to destroy RDB samples and related results. This was more than the total number of requests in the previous 5 months before these letters were sent out.

I was particularly interested in this letter because of my master’s project on Minnesota’s newborn screening program. Because this wasn’t my first exposure to the newborn screening program in Minnesota, I realized that I might be able to help clarify some of the aspects of this letter that other parents should be aware of. First, CCHF claims that, “Consent requirements mean ownership claims. But now, only if you object will the State release ownership claims to your baby’s DNA.”  However, CCHF is asking parents to complete “the official state opt-out form” and return the “I Did It” postcard. However, this is misleading as the form is actually the ‘Directive to Destroy Newborn Screening Samples and Test Results’ form. CCHF does not inform these parents that they could submit a request to MDH to return the remaining samples back to them. The ‘Directive to Destroy’ may not be the best choice for every family. What if that family should avoid destroying the sample due their medical history?

CCHF also claims “Without consent, the law allows research to be conducted on your child.” After Bearder v. Minnesota, this claim is simply not true. MDH stores and retains residual dried blood samples and test results from infants that participated in the newborn screening program as of August 1, 2014. These samples are used for quality assurance testing and the development of new tests for the screening panel, but the law does not allow research to be conducted on these samples. If they should wish to do research, researchers and MDH must obtain written informed consent from parents in order to use samples (Parental Consent for Research Use of Newborn Screening Blood Spots and Test Results).

Parents who have questions about their state’s newborn screening program practices should consult with their primary care provider or state’s newborn screening program office. If their provider cannot provide the answers, the state’s newborn screening program should have staff available to assist them. For more information about Minnesota’s newborn screening program, visit the state’s website. Information about other state programs, including contact information can be easily found on Baby’s First Test.

Jarboe Minnesota Letter (1) Jarboe Minnesota Letter page 2 (1)

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

What’s the Matter with Indiana?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

With all of the hoopla over Indiana’s recent enactment of its Religious Freedom Restoration Act (RFRA), a poorly-written law that gives businesses and individuals broad license to discriminate against members of the lesbian, gay, bisexual and transgender community, another travesty unfolding in that state has gone overlooked. Specifically, Indiana is experiencing the largest outbreak of HIV in the Hoosier State’s history, an epidemic sparked in part by partisan politics.

Just last week, Indiana Governor Mike Pence declared a public health emergency in Scott County after 79 people tested positive for the virus that causes AIDS, an outbreak fueled by rampant injection drug use. In past years, that rural county saw an average of only 5 new cases of HIV infection annually.

So what does partisan politics have to do with this public health emergency? Plenty. Consider, for example, Indiana’s ban on needle exchange programs.

HIV, hepatitis C (HCV), and other blood borne diseases are readily spread between drug users who share contaminated injection equipment. One of the easiest ways to prevent the spread of HIV among injection drug users (IDUs) is a needle exchange program, which allows drug users to obtain sterile syringes, hypodermic needles, and other paraphernalia without a prescription and at little to no cost.

Dozens of studies conducted in the United States and overseas have shown that needle exchange programs work extremely well. Among IDUs in New York City, for example, rates of HIV dropped four-fold when needle exchange programs were first introduced. In fact, the effectiveness of these programs in reducing rates of HIV infection among injection drug users is so great that US Office of National Drug Control Policy, the US National Institutes of Health, the US Surgeon General, the US Centers for Disease Control and Prevention, the American Medical Association, the World Health Organization and the United Nations Office on Drugs and Crime all encourage their use.

Despite this, needle exchange programs are still banned in 24 states, including Indiana. What is the argument that predominantly conservative politicians use to oppose these programs? That they encourage illicit drug use. But even this claim lacks credence. One study conducted in San Francisco found that drug use dropped three-fold among IDUs who used that city’s needle exchange program. Most of these programs also provide peer education and referrals to treatment clinics, helping participants break free of their drug addiction.

Thankfully, Governor Pence finally (sort of) gets it. He recently announced a 30-day moratorium on enforcing Indiana’s ban, stating that “I do not support needle exchanges as anti-drug policy, but this is a public health emergency. I’m going to make a decision on the best science and the best way to stop this virus and this outbreak in its tracks.” Public health officials in Indiana can now implement a needle exchange program should they want to. While it is too late for the 79 newly infected residents of Scott County, such a program may slow the spread of HIV to other Hoosiers.

Indiana’s now-suspended ban on needle exchange programs aside, politically motivated spending cuts are also to blame for the outbreak in Scott County. That county has been without a HIV testing clinic for nearly two years, the direct result of partisan wrangling about abortion.

Until 2013, the Scott County Planned Parenthood clinic was the sole provider of HIV counseling and testing in that rural community. That facility closed after Republican lawmakers cut state funding of Planned Parenthood because of their opposition to abortion. As a result, five clinics run by Planned Parenthood of Indiana & Kentucky were shuttered, including the one in Scott County.

None of those five now-closed clinics provided abortion services. Rather, like most Planned Parenthood clinics nationwide, they mainly provided other desperately needed health care services to poor men and women. Those services included family planning counseling; pregnancy testing and prenatal care; screening for breast, cervical and testicular cancer; testing and treatment for sexually-transmitted diseases; and HIV testing and education. Those services are now largely unavailable to the economically disadvantaged residents of Scott County.

In their zeal to demonize and defund Planned Parenthood over abortion, a still legal medical procedure that accounts for less than 3% of the total services that organization provides, Indiana lawmakers thus created the very conditions needed for an outbreak of HIV to occur.

Sadly, those conditions are being replicated elsewhere. Just last week, for example, Texas lawmakers announced a plan to cut $3 million from state-run HIV prevention programs and redirect the funds to faith-based abstinence-only education projects. That state currently ranks third nationwide in new HIV diagnoses. It is now likely to claim the top spot, a rather dubious honor.

So long as conservative politicians continue their efforts to defund Planned Parenthood, continue their ideological opposition to needle exchange programs, and continue to prioritize the needs and goals of their corporate donors over the health and welfare of their own citizens, outbreaks like the one in Scott County will continue to occur. I only hope that voters finally sit up and take notice of the very real public health threat that these policies present.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 9, 2015, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Guatemala, the GDR and Research Ethics Policy Development

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to

by Andrei Famenka, Bioethics Program Alum (2013)

When it was first announced, I was particularly intrigued by a recent webinar called, ‘Gonorrhea, Guatemala and Gung-Ho Researchers: The Role of Controversy in Shaping Research Ethics Practice and Policy’. This particular topic was of special interest to me because of my interests in research ethics policymaking and the role of social, cultural, and economic factors in this process.

As good as the webinar was, it highlighted a peculiar fact: although a good deal of attention has been paid to unfair research conducted in developing countries, such as Guatemala Gonorrhea study, such analyses have primarily focused on the impact of these controversial studies on research ethics policy development in the United States. Missing from these analyses is the impact that the scandals have had on research ethics policies in developing and transitional countries where the unfair practices have occurred. This lack of analysis is significant because these controversies often fail to lead to policy changes in developing and transitional countries.

One of the latest examples of unethical research which didn’t result in any policy modification comes from Eastern Europe. It has recently come to light that just before the fall of the ‘iron curtain’, some major Western pharmaceutical companies conducted hundreds of controversial drug trials in the German Democratic Republic (GDR, the Communist former country of East Germany), in which more than 50,000 East German patients served as guinea pigs—many without their knowledge or consent. More than 600 drugs were tested on unwitting East German patients, including prematurely born infants, alcohol addicts, and people diagnosed with depression. Moreover, despite suspicions that some of the trials resulted in several fatalities, the participating hospitals were reluctant to investigate.

Despite hot debates in the media, the controversy over this unethical research didn’t push policymakers in the countries of Eastern and Central Europe to revise the current policies and programs on the protection of human subjects. And yet, recent research on Baltic countries, Belarus, and Poland clearly demonstrates these policies are lacking.

Although it has become almost a proverb that research ethics was ‘born in scandal’, a closer look at the history of research ethics provides evidence that no matter how big a scandal might be, it can result in policy change only if it resonates with broader social movements or shifts in public views, ideas, and values. In fact, outrageous scandals, hot debates, and profound controversy can serve only as triggers or catalyzers of change under the right socio-political, cultural, and economic conditions. This reflects the views presented by Ezekiel Emanuel and Christine Grady when they argue that over the past 70 years, the system of research oversight in the United States has evolved through four distinct stages. These stages embodied different values and perspectives on research and reflect dominant views in general society. Research oversight changed as these dominant views evolved over time.

Central and Eastern European countries still lack a strong civil society and sufficient levels of political freedom, economic and social opportunities, and transparency guarantees. The enabling conditions for a strong set of research ethics policies is not sufficiently in place. Attempts to force these policies would only create confusion about the underlying ethical values and the goals of the research oversight.

The way to ensuring the protection of human research subjects in transitional countries is most likely to be a long and difficult one, as it involves efforts to reshape some basic elements of society. In this regard, training programs are an important part of the process, but these will only be successful when they are coupled with broader social changes.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

How to Get A Head in Life

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to

by Bonnie Steinbock, Bioethics Program Faculty

An Italian scientist, Sergio Canavero, claims that he is two years away from performing the world’s first human head transplant, in which the head of one person would be grafted onto the body of a newly deceased person

Canavero’s proposed procedure would involve cooling the patient’s head and the donor’s body so that their cells do not die during the operation. After the head is cut off the patient’s body, the blood vessels would be lined up, and the spinal cord cut with a very sharp knife to minimize nerve damage. The patient would have to be immobilized by being kept in a coma for several weeks. Canavero believes that the patient would be able to speak when he woke up, although a year or more of physical therapy would be necessary for him to be able to move his body.

The biggest technical obstacle is that no one knows how to reconnect spinal nerves and make them work again, although there has been some success with animals. In 1970, a team at Case Western Reserve transplanted the head of one monkey onto the body of another, although they did not attempt a full spinal cord transfer. The monkey was unable to move its body. In 2014, researchers at Harbin Medical University in China were able to preserve breathing and circulatory function in mice. However, as is well known, “everything works in mice.” Most neurosurgeons are skeptical that this would work in humans. Moreover, it seems unlikely that ethics review boards today would approve experiments to see if the procedure worked in non-human primates.

Technical challenges aside, there are a number of ethical questions to be considered. We know that some people have been unable to adjust to transplanted appendages and have even had them removed. The psychological impact of waking up with a new body is unknown: how would you get truly informed consent for that? Nevertheless, if the procedure would save the patient’s life, and the alternative is death, perhaps this is a risk we should let competent adults take.

But would the patient’s life be saved? This is not a medical or scientific question, but a conceptual or metaphysical one. It depends on one’s theory of personal identity. On one view, known as mind essentialism, we human persons are essentially embodied minds, that is, embodied beings with the capacity for consciousness. Since the capacity for consciousness resides in the brain, we are our functioning brains. If your brain could be transplanted onto someone else’s body and continue to function, you would continue to exist.Indeed, philosopher Jeff McMahan created the hypothetical example of a brain transplant as evidence for mind essentialism.

An opposing view of personal identity holds that we are not essentially minds, but human animals or organisms. Its primary supporter, David DeGrazia, holds this to be a matter of educated common sense, and its denial by mind essentialism to be a serious defect in the theory. But what about the plausible intuition that “you go where your mind goes”? Its plausibility stems from the conflation of two distinct senses of identity: numerical and narrative. Narrative identity is psychological. It involves our sense of who we are: our beliefs, memories, values, and intentions. By contrast, numerical identity refers to what makes me the same individual, over time. On the human organism view of identity, I would continue to exist as the same individual even if my narrative identity were lost, as it would be if I permanently lost consciousness, as in permanent vegetative state (PVS).

We care deeply about narrative identity, DeGrazia says. Indeed, it is “what matters in survival.” That is why most people would not want to be sustained in (reliably diagnosed) PVS. Nevertheless, the organism account allows us to say that we can become PVS. On the embodied mind view of identity, this is literally impossible. My organism could become permanently unconscious, but since I am not my organism, I would no longer be there.

Both are plausible metaphysical views: which one is correct? In my view, neither, because both rest on the questionable assumption that we are essentially something. Why insist that we must be either embodied minds or organisms? Why can’t we be both? As a person, Terri Schiavo, ceased to exist when her cerebral cortex permanently ceased functioning in 1992. As a human organism, she died in 2005. And if she has an immortal soul, she continues to exist today.

From a practical perspective, the view of identity one takes doesn’t really matter as regards head transplants, since it is narrative identity that matters in survival. But would narrative identity be preserved? This is not simply a matter of reconnecting the spinal nerves, enabling the reconstructed person to be awake and sentient. If the patient woke up and had none or few of the memories, beliefs, values, or concerns he had before the head transplant, his narrative identity would be lost. Unless there was a possibility of recovering many of the mental contents of his mind, it is hard to see what benefit there would be in even a successful head transplant.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Happy Birthday Obamacare!

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

This week, before a crowd of students attending the obligatory Monday morning convocation at Liberty University, Ted Cruz announced that he was running for President in 2016. This makes Mr. Cruz, a first-term senator from Texas, the first major Republican to officially declare their candidacy.

That Senator Cruz made this announcement on the 5th anniversary of the Affordable Care Act’s signing into law is not surprising. Mr. Cruz has made the repeal of Obamacare (as the Affordable Care Act is colloquially known) a cornerstone of his campaign. Curiously enough, the Senator will also soon be a beneficiary of this program.

Mr. Cruz’s wife Heidi, through whom he previously had health insurance, has taken an unpaid leave of absence from her job as a managing director for Goldman Sachs for the duration of the presidential campaign. The Cruz family will now obtain coverage through the federal insurance exchange program, and will receive the government health insurance subsidy provided to all lawmakers and congressional staffers under the Affordable Care Act.

A lot of pundits have called that hypocritical. I don’t quite see it that way. It’s not hypocritical to follow (and even benefit from) a law that you oppose and are working to repeal. It’s just tacky. What I do have an issue with, however, are the blatant lies told by Senator Cruz and his Republican colleagues about Obamacare.

In a recent interview, Senator Cruz explains his opposition to the Affordable Care Act thusly: “What is problematic about Obamacare is that it is killing millions of jobs in this country and has killed millions of jobs. It has forced millions of people into part time work. It has caused millions of people to lose their insurance, to lose their doctors and to face skyrocketing insurance premiums.” But none of that is true.

Consider, for example, the oft repeated claim that fewer people have health insurance now than before Obamacare was signed into law. The numbers that Cruz, House Speaker John Boehner, and other conservative politicians use to support that assertion? Between March 2010 and March 2015, approximately 6 million Americans received cancellation notices from their health insurance plans. In this same period of time, only 4.5 million Americans signed up for new plans through one of the federal- or state-run health insurance exchanges. That’s a net loss of 1.5 million from US health insurance rolls, right?

Wrong. What those figures don’t include is the number of people who signed up for new plans through other means, such as insurance brokers. It also ignores the 9.1 million people who signed up for Medicaid, the government-run insurance plan that was greatly expanded under the Affordable Care Act. A recent Gallup poll found that the number of uninsured Americans has fallen to 13.4%, a record low. That drop has been greatest in those states, like New York, that have openly embraced Obamacare by expanding Medicaid and by setting up state-based insurance exchanges.

Of course, all these people are paying vastly more for their health insurance now then before Obamacare became the law of the land. Or so opponents claim. But are they? In the years immediately prior to passage of the Affordable Care Act, individual health insurance premiums increased an average of 10 percent annually. By contrast, premiums for mid-level plans offered through health insurance exchanges increased by only 2 percent in 2015, and price for insurance plans in the largest metropolitan markets actually dropped.

Finally, one of the largest criticisms of Obamacare is that it is a “job killer.” Specifically, critics believe that cash-strapped employers unable to provide health insurance to their employees will be forced to lay off workers. Alternatively, since the Affordable Care Act only requires that health insurance coverage be provided to those who work more than 30 hours a week, employers will eliminate full-time positions in order to sidestep this mandate. Thankfully, this is also not the case. The United States has seen 60 months of consecutive job growth since the Affordable Care Act was passed, the longest stretch of employment gains in history. The number of Americans involuntarily working part-time jobs has also declined steadily.

In fact, none of the arguments or predictions used by conservative lawmakers opposed to the Affordable Care Act have proven to be true. The economy hasn’t collapsed, workers haven’t lost their jobs, the federal deficit hasn’t skyrocketed, insurance premiums haven’t risen steeply, and doctors haven’t fled the healthcare industry in droves. In addition, the number of uninsured has dropped and those who obtained new plans though the health insurance exchanges are largely happy with their coverage.

It’s time for opponents of Obamacare to accept these facts. The Affordable Care Act is not an unmitigated disaster, as Ted Cruz and other conservative politicians would like you to believe. Rather, it is an unprecedented success. It has achieved exactly what it set out to do by reducing the number of uninsured while containing health care costs.

Those on the right might have ideological objections to Obamacare. Some of these objections might even be valid. But if you’re going to spend most your time repeatedly trying to repeal this successful law, instead of tackling other looming crises like immigration reform and student debt, at least have the courage to stand up for your convictions and back them with concrete arguments and supporting data.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 26, 2015, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Will Ariadne Lead Us Through the Maze of End-of-Life Healthcare?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to


by Richard Koo, Bioethics Program Alum (MSBioethics 2011) and Adjunct Faculty

About four years ago, Susan D. Block, M.D. posted a blog on Harvard Business Review’s website as part of a series of writings focusing on innovation in health care. In her blog, she bemoaned the “lousy job” doctors do in communicating with patients when it becomes apparent that additional treatment and technology will fail to stave off death. Among several other proposals, she suggested that standards for appropriate documentation of end of life discussions should be developed, promulgated, and used as reportable indicators of quality care. To carry out that innovation, she proposed that “all electronic medical record systems would be expected to support documentation of the patient’s health care proxy, values and goals” and “a broadly-agreed-upon definition of populations for whom these discussions and documentation are appropriate would be developed.”

Dr. Block is no stranger to the subject of end of life communications between doctors and patients. She participated in a number of panels and has authored articles on the subject since the 1990s. She also did not wait for the medical profession to follow through on her proposals. As Director of the Serious Illness Program at Ariadne Labs, Dr. Block spearheaded the development of a system (the “System”) to assure that doctors caring for seriously ill patients can develop competency in communicating with their patients so that the patients “can live with their serious illness and into the last stage of life with dignity, control and a sense of peace.” The System aims to train physicians in identifying appropriate patients for such communication, determining the right time to initiate the serious illness conversation, engaging in serious illness planning, helping patients discuss their end-of life preferences with their families, and documenting those plans and preferences in the patient’s electronic health record.

Presently, Ariadne Labs is evaluating the outcomes of the System through a series of clinical and implementation trials measuring outcomes in oncology, primary care, nephrology, chronic illness, surgical and emergency settings and adapting it to culturally diverse populations. The plan is to launch the System nationally in the fall of 2015 through a collaborative of approximately 20 health care networks to test it in different populations across the country.

Even before System launch, I’ve heard some potential concerns about the System from health care professionals who work with seriously ill patients day to day:

Pushback 1: “Discussions with patients with serious illness near the end of life are intensely personal and depend on an individual’s health care trajectory, views on life, death, and religion, financial situation as well as family dynamics. No standardized set of conversation guides, scripts, checklists and reminders can be practically useful.”

Counterpoint: “Standardized” doesn’t necessarily mean one size fits all. Though the System hasn’t yet been publicly released, based on Dr. Block’s body of work, my bet is that the System will direct physicians to take into account individualized variations in patient background, prognoses, situations and preferences. It should also help the physicians structure their communications according to those variations.

Pushback 2: “The reason why the medical profession does a “lousy job” in end of life communications is because many doctors have little motivation or interest to get good at it. Changes to the U.S. health care delivery system of a more fundamental nature have to be made before the medical profession current approach to communications with seriously ill patients will change.”

Counterpoint: So what are health care professionals supposed to do: sit on their hands until fundamental changes happen?   Communicating with patients is an integral part of the provision of health care. Health care professionals have an ethical imperative not to do a “lousy job” in that regard, whether or not these improvements are financially rewarded.

Pushback 3: “The medical profession would be better off leaving the task of difficult discussions near the end of life to those who presently deal with it best, namely palliative care physicians, nurses and nurse practitioners, hospice care specialists, social workers and patient advocates.

Counterpoint: One of the driving forces behind the development of the System is to raise the recognized standard of care of all physicians who treat seriously ill patients. Leaving the task of having appropriate end of life planning and communications in the hands of a cadre of specialists does nothing to address the “lousy job” physicians do that Dr. Block bemoaned. Any improvement in serious illness communications and the heightened sensitivities that the System might help bring about would also enhance the prospects that physicians will work collaboratively with the rest of the health care team to improve patient care near the end of life.

From a broader view, these potential concerns about the System seem symptomatic of the threat that innovative ideas present to the status quo. Personally, I’m excited about the possibilities of the System, in part because of my great respect for Ariadne Labs and its leaders, including Executive Director Atul Gawande, M.D.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Should Medical Staff ‘Google’ Patients?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to


by Brandon Hamm, Bioethics Program Alum (MSBioethics 2012)

On several occasions, a new admission or psychiatric consultation has been accompanied by patient information that was “googled” by nursing or consulting practitioners. On some occasions, the ‘googled’ information has admittedly been helpful for refining diagnosis and management. On other occasions, it has seemed unnecessary for patient care. HIPPA does not protect information publicly available on the internet, but is it ethical for medical staff to “google” their patients?

The first time that I personally ran into this issue was during a psychiatric consultation requested for suspected factitious disorder (patient attempting to deceive by producing/providing false symptoms). The patient presented as a new patient (to our geography and institution) with shortness of breath and chest pain. After an extensive workup, the medical team was puzzled that the patient’s symptoms did not match his objectively normal physiology. The clinical next-steps under consideration were invasive. The medical team was not yet able to obtain previous records from outside hospitals and the patient declined consent for collateral information. So the team “googled” the patient. We found a forum accusing the patient of inducing arrhythmias for medical attention and regularly committing social/financial frauds. Later, records were later obtained from an outside hospital that revealed a history of hospital-hopping and recurrent malingering /factitious behavior resulting in medically unnecessary procedures.

In this case, the “googled” information decelerated the invasive (significant risks) trajectory of the patient’s care. This also facilitated better management of the building conflict between the patient and the frustrated medical team. In this case, “googling” produced beneficent, or at least non-maleficent results. And these would be the typical justifications for “googling” a patient, but it is much harder to claim that it respected patient autonomy. Perhaps more importantly, I worry about what impact “googling” has on trust in the patient-physician relationship.

Despite public attention from Haider Warraich’s New York Times article “When Doctors ‘Google’ Their Patients”, the ethics of “googling” patients has received scant attention in bioethics literature. What consensus there is deems as unethical “googling” for non-clinical purposes. When “googling” is used as a clinical tool, there remains some disagreement. Volpe et al (2013) argue that “googling” patients is bad practice because it encourages providers to withdraw from patient relationships, can damage trust, and invades patient privacy. George et al (2013) point out searching is legal and not considered a breach of privacy for employers screening applicants. Consequently, this group proposes that, at times, it is irresponsible not to “google” patients when traditional information sources (patient, patient medical record, previous providers) are exhausted or unavailable. Various commenters (Krischner et al, 2011) point out, however, that information obtained on the internet is of variable accuracy, and using it will consistently break trust and rapport when disclosed to the patient.

“Googling” for patient information is somewhat different in psychiatry than it may be in other areas of medical practice. A patient’s social circumstances, criminal history, attunement with reality, and even provision of truthful information are clinically pertinent for psychiatrists to perform accurate diagnosis and management. Since this information (with variable accuracy) may be readily available on the internet, temptation to “google” patients may be strongest for psychiatrists. A patient’s posted suicidal thoughts or homicidal threats are clearly of clinical significance. And these may not be available in the normal course of care. For example, patients with acute paranoid psychosis are often very protective of even the most basic personal information. Moreover, concerns about compromising patient trust may be blunted in psychiatry—psychiatrists are accustomed to damaging rapport when admitting patients involuntarily who are a significant danger to self or others.

Along with others, I believe that practitioners should never “google” for clinically irrelevant patient information. While it may be acceptable to “google” new colleagues and new friends, the relationship with a patient should be understood differently. “

Googling” for clinically relevant information should only be undertaken after a clear articulation of the reasons for “googling” and the necessity of the information that is being sought. Clinical information should ideally be obtained from the patient, medical records, previous providers, and patient- permitted others. In cases when these resources are exhausted /unobtainable, and significant patient benefit/harm is at stake, practitioners should only look to information obtained from the internet as a last resort. Some guidelines for psychiatrists were proposed by Clinton et al (2010). Specifically, these guidelines encourage the psychiatrist to consider his or her clinical intention, the potential for trust impairment, possibly obtaining consent for the search, and the impact of revealing obtained information to the patient or in documentation.

What we don’t have here is a clear algorithm for determining when it’s okay to “google” a patient and when it’s not. And so I wonder what you’re experiences have been and when you think it’s appropriate.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]