Govind persad

When All You Have is a DALY, Everything Looks Like Disease

Recently the Petrie-Flom Center’s annual conference brought together medical experts, bioethics scholars, and disability advocates to rethink how medical systems and public health policies can engage with disability.

During the many fascinating panels at “Beyond Disadvantage: Disability, Law, and Bioethics” one idea that sparked some debate was whether we should use quality/disability adjusted life years (QALY/DALY) to set priorities for who gets access to healthcare resources. Prof. Govind Persad, a bioethicist at Johns Hopkins and blogger for Bill of Health, suggested in his presentation that we should dramatically reduce the role of such utilitarian calculations in priority setting, instead focusing on the genesis of the disadvantage.

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State-Level Solutions to Discrimination in Organ Transplants 

By Emily Largent

organ transplant
Doctors in North Dakota perform a kidney transplant. (Photo by ndguard/Flickr)

In recent years, alleged instances of discrimination against people with disabilities in organ transplantation have captured public attention.

In 2012, for example, the parents of Amelia Rivera, a child with Wolf-Hirschhorn syndrome, alleged that they were told their daughter was not a candidate for a kidney transplant because of her “mental retardation.” The Children’s Hospital of Philadelphia denied “disqualify[ing] transplant patients on the basis of intellectual ability.” Nevertheless, more than 51,000 individuals signed a change.org petition demanding that the hospital “allow the life saving [sic] transplant four-year-old Amelia Rivera needs to survive.”  Ultimately, Rivera received a living donor kidney transplant from her mother.

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Beyond Disadvantage: Photos from the Petrie-Flom Annual Conference

At last week’s Petrie-Flom Center Annual Conference, “Beyond Disadvantage: Disability, Law, and Bioethics,” discussed a number of topics related to the “mere difference” vs. “bad difference” disability theory debate.

Over the course of the day, six panels of experts shared their research and views on topics ranging from health care as eugenics to epistemic injustice to organ donation.

We will have the videos of the event soon, but in the meantime, enjoy the tweets from #rethinkingdisability and some photos from throughout the day by photographer Martha Stewart.

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Medical Professionals with Disabilities Workforce and their Associated Challenges

By Paulchris Okpala

person wearing medical scrubs

Do the provisions of the 2008 Americans with Disabilities Act Amendments Act (ADAAA) address challenges faced by medical professionals with disabilities (MPD)?

A 2012 report on Americans with disabilities from the US Census Bureau suggests that it is highly unlikely. There is every reason to be alarmed by the increasing number of medical professionals with disabilities who leave their jobs, or express the intention to quit employment. There is also a rapidly decreasing number of MPD who express the desire to seek employment. Could this trend be attributed to the challenges faced by the MPD in the workplace?

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Dementia, Disability, and Advance Medical Directives

By Rebecca Dresser

pencil drawing of a brain Anyone fortunate enough to live beyond middle age faces a risk of developing dementia. Dementia is a widely feared disability. People often say they wouldn’t want to live if they developed the condition.  

Experts in law and ethics praise advance directives, or instructions to follow on behalf of patients, as a tool giving people control over the life-sustaining medical care they later receive as mentally impaired dementia patients. Some advance directive supporters also want the law to recognize advance requests to withhold ordinary food and water in the late stages of dementia. And some argue that the U.S. should follow the Netherlands in allowing doctors to give lethal drugs to people who made advance directives asking for assisted death if dementia makes them unable to live at home or to recognize their loved ones.  

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long staircase

Epistemic Injustice, Disability Stigma and Public Health Law

By Daniel Goldberg

Public health law can integrate medical and social understandings of disability in ways that promise to reduce disability stigma and enhance epistemic justice.

However, models of disability currently embedded in public health law do precisely the opposite, at least partly due to the fact that public health laws have historically assimilated medicalized models of disability.

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2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

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Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times

By Leslie Francis

Another anniversary of President Bush’s signing of the Americans with Disabilities Act (ADA) is coming up in late July, yet the nation remains far from offering even a semblance of equitable societal opportunity to most individuals with disabilities.

For them, full social participation is dismissed as merely an idealistic dream. With its focus on restoration of full functioning for patients, the health care delivery system might be supposed an exception, but a closer look shows the opposite is true.

Physicians’ offices, clinics, and hospitals too often have not been made accessible. Too frequently, these facilities have diagnostic or treatment equipment that some people, due to disability, cannot use. Health care provider staff are not trained to interact with or assess disabled individuals, and may be swayed by implicit biases that target disability, just as are non-medical personnel or laypersons in the population.

disability rights protest sign
Photo by The Leadership Conference on Civil and Human Rights/Flickr

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Bill of Health Blog Symposium: Research Integrity and Trustworthy Science: Challenges & Solutions

We are pleased to host this symposium featuring commentary from participants in the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences event, “Research Integrity and Trustworthy Science: Challenges and Solutions.”  Below, Susan M. Wolf tees up the issues.  All posts in the series will be available here.

By Susan M. Wolf, JD (Chair, Consortium on Law and Values in Health, Environment & the Life Sciences; McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine, University of Minnesota)

Trustworthy science is crucial to progress in scientific understanding, patient care, and product development. Yet threats to the integrity of science and to public confidence loom large. Researcher misconduct, inadequate education of new researchers, concerns over the reproducibility and rigor of scientific research, predatory journals that fail to perform thorough peer review, and oversight lapses all constitute significant threats to sound science and public trust.

A 2017 report from the National Academies on Fostering Integrity in Research carefully analyzed “detrimental research practices.” The report called for significant changes in the policies and practices of journals, research institutions, and researchers. Among the proposals was creation of a Research Integrity Advisory Board (RIAB) as an independent nonprofit. Further recommendations called for changes to allow researchers to reproduce results, including archiving datasets and code.

In March 2018, the University of Minnesota responded to the emerging research challenges and solutions by sponsoring a conference on “Research Integrity and Trustworthy Science: Challenges and Solutions.” We invited leading analysts to address the challenges for researchers, journals, and research institutions. In this blog symposium, plenary speakers from the conference examine three foundational elements of credible research:

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Challenges for Investigators—Generating Reproducible Research Results

This post is part of a series on emerging research challenges and solutions. The introduction to the series is available here, and all posts in the series are available here.

By John P.A. Ioannidis, MD, DSc, C.F. Rehnborg Chair in Disease Prevention, Professor of Medicine, of Health Research and Policy, of Biomedical Data Science, and of Statistics, and Co-Director, Meta-Research Innovation Center at Stanford (METRICS), Stanford University

Generating reproducible research results is not an easy task. As discussions about a reproducibility crisis become more common and occasionally heated, investigators may feel intimidated or even threatened, caught in the middle of the reproducibility wars. Some feel that the mounting pressure to deliver (both quantity and quality) may be threatening the joy of doing science and even the momentum to explore bold ideas. However, this is a gross misunderstanding. The effort to understand the shortcomings of reproducibility in our work and to find ways to improve our research standards is not some sort of externally imposed police auditing. It is a grassroots movement that stems from scientists themselves who want to improve their work, including its validity, relevance, and utility.

As it has been clarified before, reproducibility of results is just one of many aspects of reproducibility. It is difficult to deal with it in isolation, without also considering reproducibility of methods and reproducibility of inferences. Reproducibility of methods is usually impossible to assess, because unfortunately the triplet of software, script/code, and complete raw data is hardly ever available in a complete functional form. Lack of reproducibility of inferences leads to debates, even when the evidence seems strong and well-rounded. Reproducibility of results, when considered in the context of these other two reproducibility components, is unevenly pursued across disciplines. Some fields like genetic epidemiology have long understood the importance of routinely incorporating replication as a sine qua non in their efforts. Others still consider replication as second-class, “me too” research. Nevertheless, it can be shown (see Ioannidis, Behavioral and Brain Sciences, in press), that in most circumstances replication has at least the same value—and often more value—than original discovery. However, this leads to the question: how do we reward and incentivize investigators to follow a reproducible research path?

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