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 http://bioethics.uniongraduatecollege.edu/blog/

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.

[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 http://bioethics.uniongraduatecollege.edu/blog/

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 http://bioethics.uniongraduatecollege.edu/blog/

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 http://bioethics.uniongraduatecollege.edu/blog/

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 http://bioethics.uniongraduatecollege.edu/blog/

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 http://bioethics.uniongraduatecollege.edu/blog/

 

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 http://bioethics.uniongraduatecollege.edu/blog/

 

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.]

Caveat Scholasticus

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

 

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

Economists talk a lot about scarcity. Scarcity occurs when we have fewer resources than are necessary to fill our basic needs and wants. Price is usually a good indicator of scarcity. Despite the recent short-term glut of oil, for instance, increasing demand and decreasing supplies of fossil fuels means that gasoline prices will inevitably rise in the coming years.

Ethicists like myself also talk about scarcity. Medical resources are often in short supply and must be rationed. The limited number of beds in the intensive care unit means that doctors must sometimes make difficult choices about which critically ill patients are admitted to the ICU and which are not. Vaccines may also be rationed. In the event of a serious flu epidemic, for example, the New York State Department of Health has a four-tiered vacccine allocation system, with critically needed staff such as doctors, nurses, police and firefighters given priority over grocery clerks, plumbers, mechanics, and stay-at-home dads. But one thing we never thought would be an increasingly scarce resource, at least in the medical setting, was privacy.

Everyone is increasingly concerned about privacy today, and rightfully so. In a progressively wired and interconnected age, there is little about a person that isn’t public knowledge. In fact, despite all our protestations, we as individuals are largely responsible for this loss of personal privacy.

We give up our personal privacy in a myriad of seemingly innocuous ways: posting status updates on Facebook and Twitter, writing blog articles, and uploading pictures to Instagram. Everything we say or do online leaves behind a trail of personal information that can be used by public agencies and private businesses to track us, watch us, and selectively market goods and services to us.

This is true even when it comes to our personal health. As mentioned before, much of this is our own doing. We comment about our various aches and pains online, use databases like WebMD to self-diagnose and self-treat minor illnesses and injuries, and purchase over-the-counter and prescription drugs using our CVS ExtraCare card. But one thing that we would never expect is that our conversations with our physicians and psychotherapists could also become public knowledge.

If anything, maintaining patient privacy and confidentiality is one of the key ethical obligations placed upon physicians. It is an obligation that has its roots in two millennia of Hippocratic practice, and it is the foundation of the doctor-patient relationship. Patients must feel that they can share all sorts of personal information with their physician, no matter how embarrassing or stigmatizing. This information is often necessary to ensure proper diagnosis, testing and treatment.

A sixteen-year-old girl who is experiencing pain when urinating, for example, may simply have a urinary tract infection. But she may also have a more serious condition like chlamydia, gonorrhea or some other sexually transmitted infection. If she is not willing to share the fact that she is sexually active, perhaps out of fear that her parents will find out, her doctor may inaccurately diagnose and treat her.

Maintaining patient privacy and confidentiality is so important that it has been put into practice and codified into law. Following a groundbreaking observation study of what doctors, nurses and medical students shared with each other in public elevators (spoiler alert: they shared way too much), many hospitals instituted strict policies about what can and cannot be said about patients in public settings. Anyone who has been to a hospital in recent years has undoubtedly seen the signs in the hallways and elevators reminding staff of this fact. Hospital staff can reprimanded and even fired for breaching confidentiality, as happened at Cedars-Sinai Medical Center after six employees inappropriately accessed the medical records of reality television star Kim Kardashian.

State and federal laws restrict the types of information that can be shared about patients. One key federal law, the Health Insurance Portability and Accountability Act (HIPAA), places strict limits on who can access or share your medical records or your health insurance and billing information. Doctors, hospitals, and insurance companies bound by HIPAA regulations can face severe civil and criminal penalties for violating this law, including fines of $1.5 million and prison sentences of up to ten years.

Unfortunately, this privacy law is rife with loopholes. HIPAA only applies to so-called ‘covered entities,’ such as health providers and health insurance companies. It does not apply to others who may have private health information, such as life insurance companies, employers, workman’s compensation programs, law enforcement agencies, or schools. This is a significant problem, as highlighted by a recent case involving a student at the University of Oregon.

That student was allegedly raped by three University of Oregon basketball players. In a Title IX lawsuit filed against the school, she claims that the school deliberately delayed its investigation so that the men could play in an important NCAA tournament.

So what does this case have to do with medical privacy? The University is using the student’s own medical records to defend itself in court. Because the student sought clinical treatment and psychological counseling at the University health clinic, her medical record belongs to the school. A federal law known as the Family Educational Rights and Privacy Act (FERPA), ironically meant to the protect the privacy of a student’s educational records, exempts campus medical records from HIPAA’s privacy rules.

Sadly, as morally repugnant as this is, the University is well within its legal rights to do this. Until laws like HIPAA and FERPA are amended to close these loopholes, we all should be more than a little wary. Students, for example, may wish to seek off-campus counseling or treatment in order to protect the privacy of their records, even if this means that they or their families may be forced to shoulder the cost. Meanwhile, the rest of us should be a little more diligent about the types of medical information we share with agencies and organizations not covered by HIPAA, and to pause for a moment before we complain about our neck aches and back pains on social media.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 12, 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.]

Understanding the Latino Patient with Cancer

by Beatriz Lorena Hurtado, Bioethics Program Alumna (MSBioethics 2014)

As a Latina working in healthcare I have always felt the responsibility to provide education about my culture, and to clarify cultural differences and misconceptions. It is always surprising to witness how eliminating misconceptions eventually translates into an increase in patient satisfaction, and less apprehension about cultural differences from the healthcare team. This is one of the reasons why, in my view, education on Cultural Competence in healthcare is probably the most appropriate way to avoid generalizations and achieve equality in healthcare.

Latinos currently constitute seventeen percent (17%) of the nation’s population, making them the largest racial and ethnic minority in the US. They are also amongst the fastest growing minorities the United States. Should current demographic trends continue, it is estimated there will be 41 million Latinos in the United States by 2020.

These numbers should not only indicate the rising presence of Latinos in the United States, but also highlight the need for developing pathways to improve language and cultural services in the healthcare arena.

This need is particularly in oncology: as the American Cancer Society notes, cancer is the second leading cause of death for Latinos. It is also important to add that the most common cancer diagnosis in Latino women is breast cancer, while prostate cancer is the most common diagnosis in Latino men (with colon, lung, melanoma, stomach, and liver cancer following closely behind).Therefore, as it happens with any chronic disease, the medical visits are usually recurrent and the treatments involve an extensive group of healthcare professionals.

As a Latina I believe there are three important characteristics of Latino cultural expressions, meanings, and value systems that warrant specific attention:

First, family is the foundation that supports life for Latinos in general. Medical decisions are in most cases a family affair. The presence of family signifies emotional support, empathy, and togetherness, and is always favored in a difficult medical situation. Moreover, if facing a difficult moment or vulnerability, like a cancer diagnosis, family support is at the top of the list of necessities of the Latino patient. Latinos place much of their identity and self-worth into the family structure and customs.

Although it is recognized that the Latin American family has undergone changes in its structure in recent decades, it is important to note that these changes haven’t shifted the sense of group, affective value, and financial support in the immigrant family. Latinos are gregarious, often moving in culturally-defined groups. They also identify themselves within their group and by the role they play in it. Failing to recognize the place family has in medical decisions for Latino patients could be viewed as a lack of acknowledgement of who they are as persons, and their position in the micro universe that is their family life.

Second, in the Latino culture, talking about death is commonly viewed as summoning it. Acknowledging death can be seen as giving up hope, limiting a patient’s chances of surviving and a threat to their recovery. This has obvious implications for conversations about death, end-of-life issues, living wills and advance directives. Also, because of the substantial Catholic background and deep religious roots, most Latinos believe that talking about the possibility of a negative outcome is an expression of limited faith in God. It can symbolize doubt on God’s abilities to heal the sick.

Third, even though Latinos share many characteristics, they are also a very diverse group. They are united in their diversity. For instance, a Latino patient from South America may have a specific cultural response towards the healthcare team (e.g., a more entitled behavior) that may be very different from the cultural response of a Latino patient from Central America (e.g. a more humble and unassuming attitude).

Despite all the similarities that unite Latinos (language, religion, family union, etc.), there are several particular cultural conventions that vary depending on the country from where the person comes. Identifying that the patient may speak Spanish or may come from Latin America represents merely the basic steps in beginning a successful communication, but it does not contribute significantly towards building a strong a fruitful rapport with a Latino patient. To achieve this, establishing a conversation free of narrowly defined cultural assumptions is crucial. Even though Latinos share many characteristics, like the general value placed on family and the inclination to avoid discussions of death, there is a rich diversity of Latino cultures and healthcare providers must make it a point to avoid generalizations.

In the context of the Latino culture, to achieve a culturally competent treatment is to understand their culture and demonstrate respect for their differentiating traits while they are in treatment. This means providing care that recognizes and caters to those cultural differences. By acknowledging their gregarious behavior towards family and group, by attributing their reluctance to plan for the worse to their unceasing hope in their interpretation of death and dying, and by respecting the differences among these common traits, the healthcare team can provide culturally competent care. In turn, this will help the patient feel acknowledged and less intimidated by the medical environment, resulting in a more effective relationship, better care, and better outcomes.

[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.]

When Doctors Discriminate

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

Most of you have probably never heard of Jami and Krista Contreras, a Michigan couple and the proud parents of a six-month-old girl named Bay. Shortly after Bay was born, the Contrerases began interviewing pediatricians, looking for one who practiced holistic medicine.

After meeting with nearly a dozen doctors, the newly married couple finally settled on Dr. Vesna Roi, a pediatrician in private practice with nearly 19 years of experience caring for children like Bay. On the morning of their first appointment, however, Dr. Roi refused to see them. The reason: the Contrerases are a same-sex couple.

In a handwritten letter delivered to Jami and Krista by another doctor at the pediatric clinic, Dr. Roi apologized but stated that, “after much prayer following your prenatal [visit], I felt that I would not be able to develop the personal patient doctor relationship that I normally do with my patients.” Dr. Roi’s religious faith, it seems, makes her uncomfortable around lesbian couples.

I actually have some sympathy for Dr. Roi. She clearly felt that she could not give the Contrerases, or their daughter Bay, the level of care that they deserved. In fact, a strong doctor-patient relationship is the key to quality health care. If Dr. Roi felt uncomfortable around Jami and Krista, or felt uncomfortable in asking them questions about those aspects of their personal lives that could affect the health of their daughter, she might overlook pieces of information that were important for Bay’s preventative care or therapeutic treatment. The Contrerases might also pick up (consciously or subconsciously) on Dr. Roi’s unease, and be less than forthcoming about their concerns or opinions. Given this, Dr. Roi was not the right pediatrician for Bay.

Vesna Roi also had the right to refuse the Contrerases as patients. For the most part, doctors are legally bound to treat patients only once they have entered into a care relationship. Even then the doctor can terminate the physician-patient relationship under certain circumstances (if, for example, a patient is non-compliant with treatment, the patient is abusive to providers, or the services sought are not covered by the patient’s health insurance). But the physician must provide a reason for terminating the relationship and must ensure continuity of care.

Ethically, Dr. Roi is on shakier ground. If she felt that she could not establish the necessary doctor-patient relationship with the Contrerases, she probably shouldn’t take them on as patients. But Dr. Roi should have been upfront with the Contrerases sooner, rather than waiting until the morning of Bay’s first pediatric appointment to inform them of her reluctance.

Moreover, while the American Medical Association (AMA) and other professional organizations recognize the right of clinicians to refuse to provide specific treatments if they are incompatible with a doctor’s personal, religious or moral beliefs, it’s hard to see how such “conscience clauses” apply in this case. Conscience clauses are meant to apply to specific medical procedures, most notably abortion and sterilization, rather than to specific classes of patients. If we allow a physician like Dr. Roi to reject patients on the basis of sexual orientation (whatever her personal, religious or moral reason), should we also allow a doctor to turn away patients who are Black or Latino? To turn away patients who are Muslim, Jewish or Atheist? To turn away patients who are women?

Of course we would never allow this. It is morally reprehensible. This is why the AMA, the American Academy of Pediatrics and other professional organizations that respect the conscience of physicians also make it clear that doctors should not refuse care based on race, gender or sexual orientation.

It would also be illegal to refuse a patient based on race, religion or gender under the federal Civil Rights Act of 1964. Sadly, this is not the case for sexual orientation or gender identity. Lesbian, gay, bisexual or transgender (LGBT) individuals are not protected by the Civil Rights Act, but rather by a patchwork of state laws and local anti-discrimination ordinances.

Only twenty-two states have laws that prohibit discrimination based on sexual orientation in “public accommodation” (e.g. businesses that serve the public, including pediatric clinics like Dr. Roi’s). Only fourteen states extend those same protections to gender identity. Michigan is not one of those states, so that what Dr. Roi did is morally questionable but it is not legally actionable. Had she lived here in New York, she could have been sued (unless one of the Contrerases had been transgendered, since the Empire State still allows discrimination based on gender identity).

We need these laws, both at the state and the federal level. Sure, people like Dr. Roi may be uncomfortable in dealing with lesbian patients or gay clients. But that’s not a reason to legally allow or publicly condone discrimination based on sexual orientation or gender identity.

The same arguments were used for years to justify discrimination against women, Black and Jews, until the Civil Rights Act forced people to challenge their biases and question their assumptions. It’s time to do the same for the LGBT community.

As I said before, Dr. Roi was not the right pediatrician for Bay. But she could be, once she learns to look beyond her personal prejudices and see the Contrerases for who they are: human beings with the same needs, fears, and hopes as her. But it might take a legal nudge to get Dr. Roi and others like her to take that first step.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on February 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.]