Blog RSS Blog.

03/24/2017

Why Trumpcare Is DOA: It Doesn’t Address Outrageous Healthcare Prices

Paul Ryan is “excited” that the American Health Care Act, as Republicans call their bill, will trim the federal budget by several hundred billion dollars over the next decade. The 24 million people who are expected to lose insurance under … Continue reading

The post Why Trumpcare Is DOA: It Doesn’t Address Outrageous Healthcare Prices appeared first on PeterUbel.com.

Full Article

This entry was posted in Health Care and tagged , , , , . Posted by Peter Ubel. Bookmark the permalink.

03/24/2017

Why Trumpcare Is DOA: It Doesn’t Address Outrageous Healthcare Prices

Paul Ryan is “excited” that the American Health Care Act, as Republicans call their bill, will trim the federal budget by several hundred billion dollars over the next decade. The 24 million people who are expected to lose insurance under … Continue reading

The post Why Trumpcare Is DOA: It Doesn’t Address Outrageous Healthcare Prices appeared first on PeterUbel.com.

Full Article

This entry was posted in Health Care and tagged , , , , . Posted by Peter Ubel. Bookmark the permalink.

03/24/2017

Bioethics & Wine

I never thought I’d have the opportunity to use this blog title. Never, that is, until I stumbled across a company called Vinome, a California start-up that offers a curated wine service based on a customer’s individual taste profile. What makes this wine subscription service unique is not its price (although, at around $65 a bottle, it’s just a bit outside of the typical price-per-bottle for many wine club members). At Vinome, your taste profile includes not only a list of questions about your preferences, but also information from DNA sequencing from the saliva sample you provide to the company. The company website proclaims this is “A little science and a lot of fun,” but experts are skeptical about whether there is any science involved at all.

Holding aside the question of scientific plausibility, companies touting direct-to-consumer genetic screening for ancestry, medical issues, or just plain fun include information in the fine print that would give any bioethicist pause. While the Vinome website requires patrons to check the box indicating “I have read and understand the Vinome Informed Consent” prior to ordering, that “informed consent” is only available if the customer voluntarily clicks on the informed consent link. Buried at the bottom of the informed consent screen is a sentence that reads:

 

“You allow Vinome to retain your data as part of Vinome’s secure research database, for use by Vinome or its research affiliates, in an effort to improve and expand services. If any commercial product is developed as a result of the use of your data, there will be no financial benefit to you.”

 

In case the business interests are still unclear, here is more from their Terms of Service:

 

“By submitting DNA to Vinome, you grant Vinome a perpetual, royalty-free, world-wide, transferable license to use your de-identified DNA, and to use, host, sublicense and distribute the anonymous resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.”

 

That’s quite a sweeping consent, and one of which I suspect most customers will never be aware. Individuals who are just hoping for some scientific guidance on whether to buy the merlot or the syrah are also unwittingly sending their genetic information into the stream of commerce to be collected, analyzed, bought, sold, and mined for data. We might be willing to give up some of our personal information in exchange for cheaper groceries, but buying and selling our spending habits seems a lot less invasive than doing the same to our DNA. Despite our best efforts, genetic information can never truly be de-identified – DNA itself is our best identifying information.

Direct-to-consumer marketing of genetic screening has seen much growth in the past few years. In addition to Vinome, the consumer genomics firm Helix has partnered with several entities to offer services, including National Geographic (offering ancestry tracing), ExploraGen (offering “personalized epicurean experiences”), and Invitae (offering interpretation of genetic screening to provide “actionable findings” related to various diseases – requires clinician authorization). While use of genetic information in research is heavily regulated and a source of ongoing debate, should consumers of commercial genetic testing be protected as well? Are these customers aware of the information they are freely giving, and the myriad ways their most personal information may someday be used? And how does informed consent fit into this middle ground between medicine and commerce? It seems to me, at the very least, the consumer should be required to give explicit consent beyond merely “checking the box” – whether such consent could ever really be “informed” is another question altogether.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

Full Article

03/24/2017

When It Comes to Death, You Want General Lee, Not General Custer

A great quote from Atul Gawande Being Mortal. "Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don't want a general who fights to the point of total annihilation." "You don't want Cus...

Full Article

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

03/24/2017

When It Comes to Death, You Want General Lee, Not General Custer

A great quote from Atul Gawande Being Mortal. "Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don't want a general who fights to the point of total annihilation." "You don't want Cus...

Full Article

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

03/24/2017

When It Comes to Death, You Want General Lee, Not General Custer

A great quote from Atul Gawande Being Mortal. "Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don't want a general who fights to the point of total annihilation." "You don't want Cus...

Full Article

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

03/23/2017

MCDES – Pathways to Hope for Moral Injury & Other Invisible Wounds

The Minnesota Coalition for Death Education and Support (MCDES) is producing an all-day conference on May 5, 2017: "Pathways to Hope for Moral Injury & Other Invisible Wounds."

Objectives

  • Describe moral injury and related mental health traumas, e.g., PTSD.
  • Describe how forms of oppression relate to moral injury.
  • Identify and list resources, methods, and strategiesfor recovery through the arts, spiritual counseling, training, storytelling, and ritual processes.
  • Describe public lamentation for processing certain aspects of moral injury such as feelings of sorrow, betrayal, isolation, regret, and shame.
  • List strategies for educating and involving community organizations in working with those struggling with moral injury.
  • Identify and list strategies for turning greater national attention to moral injury and its impacts on physical and mental health in the larger society.


Schedule

What Moral Injury Is & What It Is Not
◆ Different Definitions of Moral Injury
◆ PTSD & Moral Injury
◆ How it is Part of Many Kinds of Trauma
◆ Dimensions of Loss & Grief in Moral Injury
◆ How Perpetrator-Victim Framing Relates to Moral Responsibility for Harm

The Places & People Impacted by Moral Injury 
◆ Moral Injury in Caregivers
◆ Oppression as Context for Inescapable Moral Injury
◆ Thinking about Suffering in Relation to Moral Injury
◆ Individual & Collective Forms

Strategies for Individual & Community Recovery
◆ Individual Strategies for Recovery.
◆ Relational Strategies for Recovery
◆ Community Strategies for Recovery
◆ Arts, Animals, Public Service

Religion & the Big Meaning Picture & Moral Injury
◆ Larger Implications of Understanding Moral Injury in Society
◆ How to Address Moral Injury in Organizations & Communities
◆ Ritual, Religion, & Benevolent Moral Authorities
◆ Restoration of Hope & Human Flourishing

Full Article

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

03/23/2017

MCDES – Pathways to Hope for Moral Injury & Other Invisible Wounds

The Minnesota Coalition for Death Education and Support (MCDES) is producing an all-day conference on May 5, 2017: "Pathways to Hope for Moral Injury & Other Invisible Wounds."

Objectives

  • Describe moral injury and related mental health traumas, e.g., PTSD.
  • Describe how forms of oppression relate to moral injury.
  • Identify and list resources, methods, and strategiesfor recovery through the arts, spiritual counseling, training, storytelling, and ritual processes.
  • Describe public lamentation for processing certain aspects of moral injury such as feelings of sorrow, betrayal, isolation, regret, and shame.
  • List strategies for educating and involving community organizations in working with those struggling with moral injury.
  • Identify and list strategies for turning greater national attention to moral injury and its impacts on physical and mental health in the larger society.


Schedule

What Moral Injury Is & What It Is Not
◆ Different Definitions of Moral Injury
◆ PTSD & Moral Injury
◆ How it is Part of Many Kinds of Trauma
◆ Dimensions of Loss & Grief in Moral Injury
◆ How Perpetrator-Victim Framing Relates to Moral Responsibility for Harm

The Places & People Impacted by Moral Injury 
◆ Moral Injury in Caregivers
◆ Oppression as Context for Inescapable Moral Injury
◆ Thinking about Suffering in Relation to Moral Injury
◆ Individual & Collective Forms

Strategies for Individual & Community Recovery
◆ Individual Strategies for Recovery.
◆ Relational Strategies for Recovery
◆ Community Strategies for Recovery
◆ Arts, Animals, Public Service

Religion & the Big Meaning Picture & Moral Injury
◆ Larger Implications of Understanding Moral Injury in Society
◆ How to Address Moral Injury in Organizations & Communities
◆ Ritual, Religion, & Benevolent Moral Authorities
◆ Restoration of Hope & Human Flourishing

Full Article

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

03/23/2017

MCDES – Pathways to Hope for Moral Injury & Other Invisible Wounds

The Minnesota Coalition for Death Education and Support (MCDES) is producing an all-day conference on May 5, 2017: "Pathways to Hope for Moral Injury & Other Invisible Wounds."

Objectives

  • Describe moral injury and related mental health traumas, e.g., PTSD.
  • Describe how forms of oppression relate to moral injury.
  • Identify and list resources, methods, and strategiesfor recovery through the arts, spiritual counseling, training, storytelling, and ritual processes.
  • Describe public lamentation for processing certain aspects of moral injury such as feelings of sorrow, betrayal, isolation, regret, and shame.
  • List strategies for educating and involving community organizations in working with those struggling with moral injury.
  • Identify and list strategies for turning greater national attention to moral injury and its impacts on physical and mental health in the larger society.


Schedule

What Moral Injury Is & What It Is Not
◆ Different Definitions of Moral Injury
◆ PTSD & Moral Injury
◆ How it is Part of Many Kinds of Trauma
◆ Dimensions of Loss & Grief in Moral Injury
◆ How Perpetrator-Victim Framing Relates to Moral Responsibility for Harm

The Places & People Impacted by Moral Injury 
◆ Moral Injury in Caregivers
◆ Oppression as Context for Inescapable Moral Injury
◆ Thinking about Suffering in Relation to Moral Injury
◆ Individual & Collective Forms

Strategies for Individual & Community Recovery
◆ Individual Strategies for Recovery.
◆ Relational Strategies for Recovery
◆ Community Strategies for Recovery
◆ Arts, Animals, Public Service

Religion & the Big Meaning Picture & Moral Injury
◆ Larger Implications of Understanding Moral Injury in Society
◆ How to Address Moral Injury in Organizations & Communities
◆ Ritual, Religion, & Benevolent Moral Authorities
◆ Restoration of Hope & Human Flourishing

Full Article

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

03/23/2017

Reading Lolita in Residency

Howard Trachtman, MD Department of Pediatrics NYU School of Medicine Throughout history, reading books has often been viewed with deep suspicion by figures in authority. The Dominican priest Girolamo Savonarola collected and publically burned thousands of objects including books on February 7, 1497 in Florence, Italy, an infamous episode that […]

Full Article