Tag: records

Bioethics Blogs

Is there a Fourth Amendment Expectation of Privacy in Prescription Records? According to the Utah District Court, Maybe Not

It might come as a surprise to many in the United States that they may have no Fourth Amendment reasonable expectation of privacy in their physicians’ records when their physicians transfer these records to state agencies under state public health … Continue reading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Jahi McMath – Evidence that She Is Now Alive Considered by Court Today

Later today (California time), is a hearing on the Motion for Summary Adjudication of Plaintiff Jahi McMath’s First Cause of Action for Personal Injuries, filed jointly by all defendants (“Defendants”) on March 23, 2017.


Judge Stephen Pulido has posted his tentative ruling. I have pasted that below.   



Defendants and for Plaintiffs McMath et al. (“Plaintiffs”) shall be prepared to address, among other things, the following: 



(1) The supporting and opposition papers are “heavy” on discussion of the various medical diagnoses and opinions but “light” on discussion of the applicable legal standards for the court to apply. For example, though Defendants include a collateral estoppel argument, there is only one paragraph addressing it on the last page of Defendants’ memorandum, with a single case cite as to the general application of collateral estoppel, and this issue is not identified in the Notice of Motion. Is this a separate basis of the motion, and if so, have Defendants given proper notice of this? Which facts in the Separate Statement of Undisputed Material Facts (“UMF”), if any, are material to this issue? 



(2) The Notice of Motion states that the motion “is made on the grounds that Jahi McMath lacks standing to sue for personal injuries because she was pronounced deceased in accord with California law in December 2013. The undisputed material facts establish that no mistakes were made in the determination of McMath’s brain death in December 2013, and the diagnosis of McMath’s brain death was made in accord with the accepted medical standards required by California law.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Human Contamination: The Infectious Border Crossings of Jeff VanderMeer’s Area X by Sophia Booth Magnone

“What if an infection was a message, a brightness a kind of symphony? As a defense? An odd form of communication? If so, the message had not been received, would probably never be received” (Acceptance 490).

“What if containment is a joke?” (Acceptance 576).

It all begins with a thorn: the delicate, glittering prickle of an unidentified plant growing at the base of a lighthouse in a sleepy coastal town. On a peaceful sunny day, the thorn pricks a man’s thumb, an act of violence so mild, so mundane, it scarcely attracts notice. Yet the end of the world starts there, where one organism pierces the skin of another. That tiny rift swells to a full-fledged invasion; the man and his lighthouse become the first targets of an inexplicable transformative force. When the initial cataclysm subsides, the coast has been purged of all human life, its inhabitants dead or transformed beyond recognition. The rest of the world is left only with questions. What exactly happened at the lighthouse? What lies dormant in that lonely landscape? Most importantly, how can whatever remains there be contained?

This nebulous, quietly sinister premise forms the foundation of Jeff VanderMeer’s novels Annihilation, Authority, and Acceptance, collectively known as the Southern Reach trilogy. The novels take place, for the most part, thirty years after the mysterious event at the lighthouse, which has been officially categorized an “environmental disaster” and, by most people, forgotten about entirely. Only the government organization known as the Southern Reach continues to investigate the cordoned-off region now designated “Area X”: from the byzantine depths of its crumbling bureaucracy, the Southern Reach dispatches research expeditions, interprets findings, and scrabbles desperately at the possibility of defensive action.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Good Death, or Assisted Suicide?

The Case of Mr. Perry and his Pacemaker

Tarris Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics

NOTE: Dr. Rosell, a bioethics consultant and educator, will present the case of Mr. Perry for ethics discussion and likely debate on Thursday, June 22, 2017 at 7:00 PM in the artfully rebuilt Westport Presbyterian Church, 201 Westport Rd, Kansas City, MO. Bring your perspectives, arguments, and personal stories of moral medical dilemma. Admission is free. All are invited and welcome.

Mr. Perry (not his real name) was 83 years old and had several medical problems. He had spent the past several months in and out of hospitals and rehab. Prior to that, he lived independently in a small Midwestern town. Widowed many years ago, he subsequently enjoyed the company of a lovely lady friend who lived down the street from the Perry home. He had five adult children and numerous grandchildren.

Life should have been relatively good for this octogenarian. But life was not good. Not anymore. “My body is all worn out. I’m worn out. Don’t want to do this anymore, Doc. They say I can’t go home and be safe. And I’m NOT going to a nursing home. No way! Just stop that little gadget that shocks me and the part that keeps my heart going. I want them stopped. Yes, the pacemaker, too. A magnet will stop it, right? Just do it. Please.”

Tired of Fighting

Mr. Perry had a cardiac resynchronization therapy defibrillator (CRT-D) implanted a few years ago. It included an electrical pacing component for heart rhythms, on which the patient was 100% dependent.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Neuroethics Blog Series on Black Mirror: Virtual Reality

By Hale Soloff
Hale is a Neuroscience PhD student at Emory University. He aims to integrate neuroethics investigations with his own research on human cognition. Hale is passionate about science education and public science communication, and is pursuing a career in teaching science. 
Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences may be lurking behind our rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we utilize our technology and how it can affect us in return. This piece is the first in a series of posts that will discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 

Black Mirror – Plot Summary 

Some of the neuro-technologies featured in Black Mirror at first seem marvelous and enticing, but the show repeatedly illustrates how abusing or misusing such technologies can lead to disturbing, and even catastrophic, consequences. This may seem scary enough, but what if the goal of a device was to intentionally frighten its user? 

In the episode “Playtest” a man named Cooper volunteers to help a video game company test out a brand-new device, referred to as a “mushroom.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Research Ethics Roundup: Congress Reviews Regulatory Compliance Costs, Why the Fogarty International Center Matters, USDA Sued Over Animal Welfare Records, Negotiating Drug Prices with Human Subjects

This week’s Research Ethics Roundup reviews a Congressional hearing on reducing overhead payments for research oversight, highlights doctors’ arguments for saving the Fogarty International Center at the National Institute of Health (NIH), discusses legal challenges faced by the US Department of Agriculture (USDA) over their decision to delay reposting animal welfare records, and outlines a […]

The post Research Ethics Roundup: Congress Reviews Regulatory Compliance Costs, Why the Fogarty International Center Matters, USDA Sued Over Animal Welfare Records, Negotiating Drug Prices with Human Subjects appeared first on Ampersand.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Time to Secure Your Implantable Medical Devices from Hackers

by Craig Klugman, Ph.D.

In the last few weeks, a major malware attack (WannaCry) paralyzed computers around the world, including electronic health records at the UK’s National Health Service and at hospitals throughout the world. Hacking is a growing problem that can cripple computer systems and even household appliances. Consider that in October 2016, an internet attack came from web-enabled residential devices (cameras, refrigerators, virtual assistants, thermostats, all of which are part of the internet of things) that crippled major websites.…

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Berman Institute Bioethics Bulletin

Berman Institute Bioethics BulletinBerman Institute Bioethics BulletinVirus Hunters Map Zika’s Spread with DNAHow to End a LifeUsers’ Guide to Integrating Patient-Reported Outcomes in Electronic Health RecordsWhen the Patient Is a Gold Mine: The Trouble With Rare-Disease DrugsGraduation 2017The Messy Relationship Between Food Stamps and HealthPutting A Lid On WasteCuts to AIDS Treatment Programs Could Cost a Million LivesMedicine Is Going Digital. The FDA Is Racing to Catch UpWorld Health Organization Elects a New Director General from Ethiopia

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records

This Users’ Guide facilitates integration of patient-reported outcomes in the electronic health record, enabling use of PRO data for multiple clinical, research, and administrative applications, and thereby promoting patient-centered care. Authors include our Joe Ali

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.