Protecting confidentiality in genomic studies

MIT Press Release
Originally released May 7, 2018

Genome-wide association studies, which look for links between particular genetic variants and incidence of disease, are the basis of much modern biomedical research.

But databases of genomic information pose privacy risks. From people’s raw genomic data, it may be possible to infer their surnames and perhaps even the shapes of their faces. Many people are reluctant to contribute their genomic data to biomedical research projects, and an organization hosting a large repository of genomic data might conduct a months-long review before deciding whether to grant a researcher’s request for access.

In a paper published in Nature Biotechnology (https://doi.org/10.1038/nbt.4108), researchers from MIT and Stanford University present a new system for protecting the privacy of people who contribute their genomic data to large-scale biomedical studies. Where earlier cryptographic methods were so computationally intensive that they became prohibitively time consuming for more than a few thousand genomes, the new system promises efficient privacy protection for studies conducted over as many as a million genomes.

The release is here.

The Revised Declaration of Geneva

Ramin Walter Parsa-Parsi
JAMA. 2017;318(20):1971-1972.

Here is an excerpt:

The most notable difference between the Declaration of Geneva and other key ethical documents, such as the WMA’s Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects and the Declaration of Taipei on Ethical Considerations Regarding Health Databases and Biobanks, was determined to be the lack of overt recognition of patient autonomy, despite references to the physician’s obligation to exercise respect, beneficence, and medical confidentiality toward his or her patient(s). To address this difference, the workgroup, informed by other WMA members, ethical advisors, and other experts, recommended adding the following clause: “I WILL RESPECT the autonomy and dignity of my patient.” In addition, to highlight the importance of patient self-determination as one of the key cornerstones of medical ethics, the workgroup also recommended shifting all new and existing paragraphs focused on patients’ rights to the beginning of the document, followed by clauses relating to other professional obligations.

To more explicitly invoke the standards of ethical and professional conduct expected of physicians by their patients and peers, the clause “I WILL PRACTISE my profession with conscience and dignity” was augmented to include the wording “and in accordance with good medical practice.”

The article and the Declaration can be found here.

Does Volk v. DeMeerleer Conflict with the AMA Code of Medical Ethics?

Jennifer L. Piel and Rejoice Opara
AMA Journal of Ethics. January 2018, Volume 20, Number 1: 10-18.

Abstract

A recent Washington State case revisits the obligation of mental health clinicians to protect third parties from the violent acts of their patients. Although the case of Volk v DeMeerleer raises multiple legal, ethical, and policy issues, this article will focus on a potential ethical conflict between the case law and professional guidelines, namely the American Medical Association’s Code of Medical Ethics.

Here is a portion of the conclusion:

The Volk case established legal precedent for outpatient mental health clinicians in Washington State. Future cases against clinicians for their patients’ harm to third parties (e.g., medical negligence, wrongful death) will be tried under the Volk standard. It will be up to the trier of fact to determine whether the victims of a patient’s violence were foreseeable and, if so, whether the clinician acted reasonably to protect them.

Without changes to this law, there is increased likelihood that future clinicians and employers in similar situations, fearful of being in Dr. Ashby’s position, will more willingly (and likely unhelpfully) breach patient confidentiality. This creates a dilemma for clinicians in Washington State, who could find themselves caught between trying to meet the requirements of the legal case and also adhering to their professional ethical guidelines.

The article is here.

State Supreme Court Establishes Right To Sue Over Medical Record Breaches

Edmund H. Mahony
Hartford Courant
Originally published January 10, 2018

The state Supreme Court established Thursday that patients in Connecticut have the right to sue doctors and other health care providers for the unauthorized and negligent disclosure of their confidential medical records.

The majority decision creates new state law and adds Connecticut to a growing number of states that allow patients to sue for damages over the release of private records by their physicians. Courts in Connecticut have held previously — as have courts elsewhere — that private suits were blocked by federal law under the 1996 Health Insurance Portability and Accountability Act or HIPAA law.

HIPAA laws establish procedures to protect medical records and empower government to impose civil and criminal penalties for violation. But HIPAA does not permit private suits to collect damages for unauthorized disclosures.

“Finally we have a remedy in Connecticut that recognizes that there is a duty of confidentiality, the breach of which can lead to compensation for damages,” said attorney Bruce L. Elstein of Trumbull, whose client, Emily Byrne, sued over an unauthorized release of her medical history.

The article is here.

Confidential deals can obscure sexual misconduct allegations against doctors

Jayne O'Donnell
USA TODAY
Originally published January 5, 2018

Here are two excerpts:

Hospitals will often take over doctors' liability in confidential settlements, which Washington plaintiffs' attorney Patrick Malone calls a "frequent dodge" to keep medical negligence claims out of the National Practitioners Data Bank. Before they hire doctors, hospitals check the data bank, which also includes disciplinary actions by hospitals, medical societies and boards, which also have access to it.

Duncan's case, however, was a "miscellaneous tort claim," filed after Ohio's one-year statute of limitations for medical malpractice claims had passed.

That's just one of the many laws working in the favor of the Cleveland Clinic and the health care industry in Ohio. Plaintiff lawyer Michael Shroge, a former Cleveland Clinic associate general counsel, says major health care systems are "very often more interested in protecting their brand than protecting the health of patients."

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Critics of settlement deals' gag clauses say they compromise patients' health and safety and are unethical.

Confidential settlements are particularly problematic when it comes to health care, as "we take off our clothes in front of doctors," said Malone, who specializes in medical malpractice cases. "For a doctor to violate that in a sexual way is the ultimate wrong," he said, adding that he only agrees to confidential settlements if his client insists and only of the settlement amount.

The information is here.

Social Media Channels in Health Care Research and Rising Ethical Issues

Samy A. Azer
AMA Journal of Ethics. November 2017, Volume 19, Number 11: 1061-1069.

Abstract

Social media channels such as Twitter, Facebook, and LinkedIn have been used as tools in health care research, opening new horizons for research on health-related topics (e.g., the use of mobile social networking in weight loss programs). While there have been efforts to develop ethical guidelines for internet-related research, researchers still face unresolved ethical challenges. This article investigates some of the risks inherent in social media research and discusses how researchers should handle challenges related to confidentiality, privacy, and consent when social media tools are used in health-related research.

Here is an excerpt:

Social Media Websites and Ethical Challenges

While one may argue that regardless of the design and purpose of social media websites (channels) all information conveyed through social media should be considered public and therefore usable in research, such a generalization is incorrect and does not reflect the principles we follow in other types of research. The distinction between public and private online spaces can blur, and in some situations it is difficult to draw a line. Moreover, as discussed later, social media channels operate under different rules than research, and thus using these tools in research may raise a number of ethical concerns, particularly in health-related research. Good research practice fortifies high-quality science; ethical standards, including integrity; and the professionalism of those conducting the research. Importantly, it ensures the confidentiality and privacy of information collected from individuals participating in the research. Yet, in social media research, there are challenges to ensuring confidentiality, privacy, and informed consent.

The article is here.

Genitals photographed, shared by UPMC hospital employees: a common violation in health care industry

David Wenner
The Patriot News/PennLive.com
Updated September 16, 2017

You might assume anyone in healthcare would know better. Smart phones aren't new. Health care providers have long wrestled with the patient privacy- and medical ethics-related ramifications. Yet once again, smart phones have contributed to a very public black eye for a health care provider.

UPMC Bedford in Everett, Pa. has been cited by the Pennsylvania Department of Health after employees snapped and shared photos and video of an unconscious patient who needed surgery to remove an object from a genital. Numerous employees, including two doctors, were disciplined for being present.

It's not the first time unauthorized photos were taken of a hospital patient and shared or posted on social media.

• Last year, a nurse in New York lost her license after taking a smart phone photo of an unconscious patient's penis and sending it to some of her co-workers. She also pleaded guilty to misdemeanor criminal charges.
• The Los Angeles Times in 2013 wrote about an anesthesiologist in California who put a sticker of a mustache on the face of an unconscious female patient, with a nurse's aid then taking a picture. That article also reported allegations of a medical device salesman taking photos of a naked woman without her knowledge.
• In 2010, employees at a hospital in Florida were disciplined after taking and posting online photos of a shark attack victim who didn't survive. No one was fired, with the hospital concluding the incident was the "result of poor judgement rather than malicious intent," according to an article in Radiology Today. 
• Many such incidents have involved nursing homes. An article published by the American Association of Nurse Assessment Coordination in 2016 stated, "In the shadow of the social media revolution, a disturbing trend has begun to emerge of [nursing home] employees posting and sharing degrading images of their residents on social media." An investigation published by ProPublica in 2015 detailed 47 cases since 2012 of workers at nursing homes and assisted living facilities sharing photos or videos of residents on Facebook. 

The article is here.

Ethical behaviour of physicians and psychologists: similarities and differences

Ferencz Kaddari M, Koslowsky M, Weingarten MA
Journal of Medical Ethics Published Online First: 18 August 2017.

Abstract

Objective 

To compare the coping patterns of physicians and clinical psychologists when confronted with clinical ethical dilemmas and to explore consistency across different dilemmas.

Population 88 clinical psychologists and 149 family physicians in Israel.

Method 

Six dilemmas representing different ethical domains were selected from the literature. Vignettes were composed for each dilemma, and seven possible behavioural responses for each were proposed, scaled from most to least ethical. The vignettes were presented to both family physicians and clinical psychologists.

Results 

Psychologists’ aggregated mean ethical intention score, as compared with the physicians, was found to be significantly higher (F(6, 232)=22.44, p<0.001, η2=0.37). Psychologists showed higher ethical intent for two dilemmas: issues of payment (they would continue treating a non-paying patient while physicians would not) and dual relationships (they would avoid treating the son of a colleague). In the other four vignettes, psychologists and physicians responded in much the same way. The highest ethical intent scores for both psychologists and physicians were for confidentiality and a colleague's inappropriate practice due to personal problems.

Conclusions 

Responses to the dilemmas by physicians and psychologists can be categorised into two groups: (1) similar behaviours on the part of both professions when confronting dilemmas concerning confidentiality, inappropriate practice due to personal problems, improper professional conduct and academic issues and (2) different behaviours when confronting either payment issues or dual relationships.

The research is here.

Beyond Googling: The Ethics of Using Patients' Electronic Footprints in Psychiatric Practice

Carl Fisher and Paul Appelbaum
Harvard Review of Psychiatry

Abstract

Electronic communications are an increasingly important part of people's lives, and much information is accessible through such means. Anecdotal clinical reports indicate that mental health professionals are beginning to use information from their patients' electronic activities in treatment and that their data-gathering practices have gone far beyond simply searching for patients online. Both academic and private sector researchers are developing mental health applications to collect patient information for clinical purposes. Professional societies and commentators have provided minimal guidance, however, about best practices for obtaining or using information from electronic communications or other online activities. This article reviews the clinical and ethical issues regarding use of patients' electronic activities, primarily focusing on situations in which patients share information with clinicians voluntarily. We discuss the potential uses of mental health patients' electronic footprints for therapeutic purposes, and consider both the potential benefits and the drawbacks and risks. Whether clinicians decide to use such information in treating any particular patient-and if so, the nature and scope of its use-requires case-by-case analysis. But it is reasonable to assume that clinicians, depending on their circumstances and goals, will encounter circumstances in which patients' electronic activities will be relevant to, and useful in, treatment.

The article is here.

Are practitioners becoming more ethical?

By Rebecca Clay
The Monitor on Psychology
May 2017, Vol 48, No. 5
Print version: page 50

The results of research presented at APA's 2016 Annual Convention suggest that today's practitioners are less likely to commit such ethical violations as kissing a client, altering diagnoses to meet insurance criteria and treating homosexuality as pathological than their counterparts 30 years ago.

The research, conducted by psychologists Rebecca Schwartz-Mette, PhD, of the University of Maine at Orono and David S. Shen-Miller, PhD, of Bastyr University, replicated a 1987 study by Kenneth Pope, PhD, and colleagues published in the American Psychologist. Schwartz-Mette and Shen-Miller asked 453 practicing psychologists the same 83 questions posed to practitioners three decades ago.

The items included clear ethical violations, such as having sex with a client or supervisee. But they also included behaviors that could reasonably be construed as ethical, such as breaking confidentiality to report child abuse; behaviors that are ambiguous or not specifically prohibited, such as lending money to a client; and even some that don't seem controversial, such as shaking hands with a client. "Interestingly, 75 percent of the items from the Pope study were rated as less ethical in our study, suggesting a more general trend toward conservativism in multiple areas," says Schwartz-Mette.

The article is here.

Should healthcare professionals breach confidentiality when a patient is unfit to drive?

Daniel Sokol
The British Medical Journal
2017;356:j1505

Here are two excerpts:

The General Medical Council (GMC) has guidance on reporting concerns to the Driver and Vehicle Licensing Agency (DVLA). Doctors should explain to patients deemed unfit to drive that their condition may affect their ability to drive and that they—the patients—have a legal obligation to inform the DVLA about their condition.

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The trouble with this approach is that it relies on patients’ honesty. As far back as Hippocratic times, doctors were instructed to look out for the lies of patients. Two and a half thousand years later the advice still holds true. In a 1994 study on 754 adult patients, Burgoon and colleagues found that 85% admitted to concealing information from their doctors, and over a third said that they had lied outright. Many patients will lie to avoid the loss of their driving licence. They will falsely promise to inform the DVLA and to stop driving. And the chances of the doctor discovering that the patient is continuing to drive are slim.

The article is here.

Healthcare Data Breaches Up 40% Since 2015

Alexandria Wilson Pecci
MedPage Today
Originally posted February 26, 2017

Here is an excerpt:

Broken down by industry, hacking was the most common data breach source for the healthcare sector, according to data provided to HealthLeaders Media by the Identity Theft Resource Center. Physical theft was the biggest breach category for healthcare in 2015 and 2014.

Insider theft and employee error/negligence tied for the second most common data breach sources in 2016 in the health industry. In addition, insider theft was a bigger problem in the healthcare sector than in other industries, and has been for the past five years.

Insider theft is alleged to have been at play in the Jackson Health System incident. Former employee Evelina Sophia Reid was charged in a fourteen-count indictment with conspiracy to commit access device fraud, possessing fifteen or more unauthorized access devices, aggravated identity theft, and computer fraud, the Department of Justice said. Prosecutors say that her co-conspirators used the stolen information to file fraudulent tax returns in the patients' names.

The article is here.

Ethical concerns for telemental health therapy amidst governmental surveillance.

Samuel D. Lustgarten and Alexander J. Colbow
American Psychologist, Vol 72(2), Feb-Mar 2017, 159-170.

Abstract

Technology, infrastructure, governmental support, and interest in mental health accessibility have led to a burgeoning field of telemental health therapy (TMHT). Psychologists can now provide therapy via computers at great distances and little cost for parties involved. Growth of TMHT within the U.S. Department of Veterans Affairs and among psychologists surveyed by the American Psychological Association (APA) suggests optimism in this provision of services (Godleski, Darkins, & Peters, 2012; Jacobsen & Kohout, 2010). Despite these advances, psychologists using technology must keep abreast of potential limitations to privacy and confidentiality. However, no scholarly articles have appraised the ramifications of recent government surveillance disclosures (e.g., “The NSA Files”; Greenwald, 2013) and how they might affect TMHT usage within the field of psychology. This article reviews the current state of TMHT in psychology, APA’s guidelines, current governmental threats to client privacy, and other ethical ramifications that might result. Best practices for the field of psychology are proposed.

The article is here.

APA Signs Onto Amicus Brief Supporting Confidentiality

Aaron Levin
Psychiatric News
Originally published August 11, 2016

APA has signed on to an amicus curiae brief with the California Psychiatric Association and the California Association of Marriage and Family Therapists in a case before the California Supreme Court with important implications for patient confidentiality and clinicians’ liability.

APA is concerned that a ruling in favor of the plaintiff would change the existing California standard (the so-called Tarasoff rule) requiring action when “a patient has communicated to the psychotherapist a serious threat of physical violence against a reasonably identifiable victim or victims.”

The case, Rosen v. Regents of the UCLA, arose when Damon Thompson, a student treated by UCLA’s counseling service, attacked and stabbed a fellow student, Katherine Rosen.

Under California law, a therapist has a “duty to protect” a potential victim if the patient makes a reasonably identifiable threat to harm a specific person.

The entire article is here.

Medical students track former patients' electronic health records

By Stephen Feller
United Press International
Originally published July 26, 2016

Although it is suspected to be largely for educational purposes, researchers in a recent study say the following of patient electronic health records as part of training poses ethical questions for the handling of those records.

A majority of medical students reported they find it beneficial to follow patient medical histories by accessing electronic health records, but some are checking cases they are not involved with out of curiosity -- which may not pose an actual problem, but poses an ethical one, say researchers at Northwestern University.

Some doctors have complained that electronic records, considered essential for better coordination of patient care and improvement of precision medicine, is too significant a burden on their time.

At the same time, most hospitals and doctors have invested heavily in moving to electronic records, with some groups of medical professionals saying the shift from paper to digital has made their jobs easier.

The article is here.

State board punishes UO counseling center director

By Diane Dietz
The Register-Guard
Originally published July 23, 2016

The state psychology regulatory board voted Friday to punish Shelly Kerr, director of the University of Oregon counseling center, for giving a student’s therapy records to university lawyers without the student’s consent.

Kerr, a senior UO staff psychologist, will receive a letter of reprimand, pay a civil penalty of $2,500 and complete a six-hour course on professional ethics, the Board of Psychologist Examiners ruled.

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“Here, given the lack of a signed release from the student and the inherent conflict between the university’s interest and (the psychologist’s) ethical obligations to protect privacy of (counseling center) clients, (Kerr) should have taken additional precautions to protect the student’s counseling records.

The article is here.

Mental illness: Families cut out of care

Liz Szabo
USA TODAY
Originally posted April 14, 2016

Here is an excerpt:

The federal law, called the Health Insurance Portability and Accountability Act, or HIPAA, forbids health providers from disclosing a patient’s medical information without consent.

Unlike patients with physical conditions, people with serious mental illness often need help making decisions and taking care of themselves, because their illness impairs their judgement, says Jeffrey Lieberman,chairman of psychiatry at the Columbia University College of Physicians and Surgeons and director of the New York State Psychiatric Institute. In some cases, patients may not even realize they’re sick.

Excluding families can have a devastating impact on patients like these, Lieberman says.

Many health providers don’t understand what HIPAA actually allows them to say. As a result, they often shut families out, even in circumstances in which they’re legally allowed to share information, says Ron Manderscheid, executive director of the National Association of County Behavioral Health and Developmental Disability Directors.

The article is here.

Ethical ways for psychologists to counteract negative reviews online

Pauline Wallin
The National Psychologist
Originally published March 9, 2016

If you Google your name, the first page of search results may show ratings from Healthgrades, Yelp and similar sites. Sometimes these ratings are less than kind. And sometimes they’re not even posted by real clients.

Upon seeing a negative review, your first thought might be, “How do I get this removed?” Check the website’s Terms of Service. Many rating sites stipulate that reviews must be based on facts and must not include inflammatory, racist, sexist or other prejudicial content.

Thus, if someone posts a scathing review, calling you “scum of the earth,” that would likely violate the rating site’s terms of service and your request for removal of that review will be granted.

If the review is obviously factually inaccurate and does not reflect your mode of practice – e.g., a complaint that you didn’t clean your stethoscope – you can probably get it removed.

The article is here.

Colorado Looks to Broaden Therapists' Power to Prevent School Shootings

by Dan Frosch
The Wall Street Journal
Originally published March 6, 2016

In a state that has been battered by mass shootings, Colorado lawmakers are trying a new, focused approach to stopping bloodshed in schools.

A proposed bill would broaden the circumstances under which mental-health professionals can report a student that they believe poses a threat, an issue that has drawn increasing attention around the country

Colorado law requires mental-health workers to alert authorities if a patient expresses a specific, imminent threat, and mandates that they warn those being threatened.

The proposal would permit therapists to alert school administrators about a potentially dangerous student even if that danger isn't immediate. It would apply to all public and private schools, as well as institutes of postsecondary education. Counselors who are school district employees are already permitted such latitude under federal law, but many schools contract with outside mental health workers to treat students, and some students are in private therapy as well, experts said.

The bill, which has bipartisan support, sailed through Colorado's House of Representatives last month by a vote of 51-12. It now heads to the Senate, where it is expected to have the backing of members of both parties.

The article is here.

Senate Unanimous in Bill Protecting Student Medical Records

By Chris Gray
The Lund Report
Originally posted February 16, 2016

Here is an excerpt:

Senate Bill 1558 allows university or college health centers, mental health centers and counseling centers to share patient medical information with someone at the university only if they have the right to access that information off-campus -- a high legal bar.

“Students will have the same expectation of privacy on-campus as off-campus,” said Sen. Sara Gelser, D-Corvallis, the bill’s chief sponsor.

She told The Lund Report that the bill was necessary because campus health records can sometimes be classified as student records under the Family Educational Rights and Privacy Act, and not protected under the more ironclad medical privacy law, the Health Information Portability and Accountability Act, or HIPAA. And whereas HIPAA medical records come with them a strong guarantee of privacy, FERPA student records can be viewed by university administrators in certain circumstances.

The article is here.