Month: May 2018

Medical Professionals with Disabilities Workforce and their Associated Challenges

The Petrie-Flom Center Staff Leave a comment

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

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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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graphic of a keylock in front of a keyboard

The EU’s GDPR in the Health Care Context 

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By Sara Gerke 

The EU’s General Data Protection Regulation, which came into force two years ago but became directly applicable in all EU Member States only last week, aims to establish an equal level of protection for the rights and freedoms of natural persons with regard to the processing of personal data in all EU Member States.

Each of us has been inundated with emails in the last few days and weeks, informing us about the GDPR and asking us, among other things, to review updated privacy policy. This flood of emails is, in particular, the consequence of the GDPR’s imposing administrative fines for infringements.

According to its territorial scope, the GDPR can also impact US companies that process personal data of data subjects who are in the EU. For example, this is the case for newspapers and affiliated websites, where the processing activities are related to the offering of services or goods, irrespective of whether payment is required. Some papers decided to simply block users in the EU, rather than abide by the GDPR’s provisions. 

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A data set that looks like America

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By Oliver Kim

May marks the annual Asian American and Pacific Islander Heritage Month, which recognizes the history and contributions of this diverse population in the United States. Accounting for that diversity though is one of the challenges facing the Asian American-Pacific Islander (AAPI) community: for example, the Library of Congress commemorative website recognizes that AAPI is a “rather broad term” that can include

all of the Asian continent and the Pacific islands of Melanesia (New Guinea, New Caledonia, Vanuatu, Fiji and the Solomon Islands), Micronesia (Marianas, Guam, Wake Island, Palau, Marshall Islands, Kiribati, Nauru and the Federated States of Micronesia) and Polynesia (New Zealand, Hawaiian Islands, Rotuma, Midway Islands, Samoa, American Samoa, Tonga, Tuvalu, Cook Islands, French Polynesia and Easter Island).

Understanding that diversity has huge policy and political implications, particularly in health policy. Read More

long staircase

Epistemic Injustice, Disability Stigma and Public Health Law

The Petrie-Flom Center Staff Leave a comment

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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Protesters in Dublin calling for Abortion rights

The Abortion Referendum in Ireland: What Happened and What’s Next?

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By Clíodhna Ní Chéileachair

As ballots were counted in Ireland’s historic vote to repeal the constitutional ban on abortion last Saturday, an informal tally took place alongside the official count, documenting the number of miraculous medals and crucifixes found in ballot boxes, no doubt surreptitiously slipped in with a ballot by zealous voters. Ireland is a perplexing place, politically speaking. It typically holds itself out as a modern, liberal country, with an open economy, highly-educated population, and forward-thinking attitude, boasting the world’s first-ever adoption of legal same-sex marriage by popular vote in 2015. It was also, until Saturday, home to one of the most restrictive abortion laws in the world.

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

The Petrie-Flom Center Staff Leave a comment

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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Happy Birthday to our National Health Service (NHS)

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By John Tingle

Our National Health Service turns 70 in July and has made remarkable achievements since its inception on July 5, 1948. The NHS is quite rightly an institution to be proud of, and it is envied across the world. Admittedly, the NHS does have its problems, but these should not detract from an overall appreciation of its core value to our society.

In 70 years a lot has happened. Nursing and medicine have evolved, new treatments, and medicines have been developed to cope with new diseases, and our concept of health has also changed.

Health is no longer just the absence of disease; it’s a far more holistic concept today.

Since its inception, the NHS has had to deal with clinical negligence claims. Today there is mounting concern that the high level and costs of clinical negligence claims threaten the very existence and fabric of the NHS.

Exactly what must be done to reduce levels and costs remains a topic of intense speculation and conjecture.

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

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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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Are Ordeals a Viable Way to Improve Health Care Delivery?

The Petrie-Flom Center Staff Leave a comment

By Thomas W. Feeley

We constantly hear that the American health care system is broken and badly in need of repair. Our system provides poor value in that our per capita spending is more than any other nation in the world and yet we do not have the best health outcomes.

For many years, incremental solutions have been brought forward as solutions to our health care delivery problem. Approaches such as using evidence-based guidelines, focusing on patient safety, requiring prior authorization of expensive procedures, making patients pay as customers, adopting lean, six-sigma, electronic records, and using care coordinators, to name just a few, have failed to solve the problem.

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