Tag: databases

Bioethics Blogs

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Guess Who’s Tracking Your Prescription Drugs?

August 3, 2017

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As drug overdose deaths continue their record climb, Missouri last month became the 50th state to launch a prescription drug monitoring program, or PDMP. These state-run databases, which track prescriptions of certain potentially addictive or dangerous medications, are widely regarded as an essential tool to stem the opioid epidemic. Missouri Gov. Eric Greitens last month announced he was creating one in what had been the lone holdout state; legislative efforts to establish a program there had repeatedly failed because of lawmakers’ concerns about privacy.

Their concerns were not unfounded.

Federal courts in Utah and Oregon recently ruled that the Drug Enforcement Administration, in its effort to investigate suspected drug abusers or pill mills, can access information in those states’ PDMPs without a warrant, even over the states’ objections. And last month in California, the state supreme court ruled that the state medical board could view hundreds of patients’ prescription drug records in the course of its investigation of a physician accused of misconduct. “Physicians and patients have no reasonable expectation of privacy in the highly regulated prescription drug industry,” District Judge David Nuffer wrote in the Utah case.

… Read More

Image via Flickr Attribution Some rights reserved by sfxeric

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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 Blogs

Preeclampsia: Study Highlights Need for More Effective Treatment, Prevention

Thinkstock

It’s well known that preeclampsia, a condition characterized by a progressive rise in a pregnant woman’s blood pressure and appearance of protein in the urine, can have negative, even life-threatening impacts on the health of both mother and baby. Now, NIH-funded researchers have documented that preeclampsia is also taking a very high toll on our nation’s economic well-being. In fact, their calculations show that, in 2012 alone, preeclampsia-related care cost the U.S. health care system more than $2 billion.

These findings are especially noteworthy because preeclampsia rates in the United States have been steadily rising over the past 30 years, fueled in part by increases in average maternal age and weight. This highlights the urgent need for more research to develop new and more effective strategies to protect the health of all mothers and their babies.

The causes of preeclampsia remain somewhat mysterious, though recent data suggest a role for proteins produced by the placenta. Because preeclampsia affects a pregnant woman’s vascular system, her unborn child can be deprived of needed oxygen and nutrients. In mild cases, the condition can often be managed with careful monitoring and blood pressure medications. But if the symptoms become severe and potentially life-threatening to either mother or child, the only answer is to induce early delivery, which carries its own health risks and high health care costs.

In the study reported in the American Journal of Obstetrics & Gynecology, a team led by Anupam Jena at Harvard Medical School, Boston, set out for the first time to quantify those costs up to a year after delivery.

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

Health Affairs – Advanced Illness & End-of-Life Care

The July 2017 issue of Health Affairs is a special issue on Advanced Illness & End-of-Life Care.


Advanced Illness And End-Of-Life Care
Alan R. Weil


Advance Care Planning With Alzheimer’s: A Tortuous Path
Rebecca Gale


Epidemiology And Patterns Of Care At The End Of Life: Rising Complexity, Shifts In Care Patterns And Sites Of Death
Melissa D. Aldridge and Elizabeth H. Bradley


A National Profile Of End-Of-Life Caregiving In The United States
Katherine A. Ornstein, Amy S. Kelley, Evan Bollens-Lund, and Jennifer L. 
Wolff


Medicare Beneficiaries With Advanced Lung Cancer Experience Diverse Patterns Of Care From Diagnosis To Death
Megan S. Schuler, Nina R. Joyce, Haiden A. Huskamp, Elizabeth B. Lamont, 
and Laura A. Hatfield


Analysis Of End-Of-Life Care, Out-Of-Pocket Spending, And Place Of Death In 16 European Countries And Israel
Martina Orlovic, Joachim Marti, and Elias Mossialos


End-Of-Life Medical Spending In Last Twelve Months Of Life Is Lower Than Previously Reported
Eric B. French, et al


Disparities In Cancer Care And Costs At The End Of Life: Evidence From England’s National Health Service
Brendan Walsh and Mauro Laudicella


Challenges Of Measuring Quality Of Community-Based Programs For Seriously Ill Individuals And Their Families
Joan M. Teno, Rebecca Anhang Price, and Lena K. Makaroun


Applying Quality Indicators For Administrative Databases To Evaluate End-Of-Life Care For Cancer Patients In Belgium
Robrecht De Schreye, Tinne Smets, Lieven Annemans, Luc Deliens, Birgit 
Gielen, Cindy De Gendt, and Joachim Cohen


Approximately One In Three US Adults Completes Any Type Of Advance Directive For End-Of-Life Care
Kuldeep N. Yadav, Nicole B. Gabler, Elizabeth Cooney, Saida Kent, Jennifer Kim, Nicole Herbst, Adjoa Mante, Scott D.

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

Health Affairs Briefing: Advanced Illness And End-Of-Life Care

Few areas of health
care are as personal, or as fraught, as care for people with serious
illnesses who are approaching death. At a point in their lives when their
needs are often as much social and spiritual as they are medical, people
are confronted with a fragmented, rescue-driven health care

system that produces
miraculous results but also disastrous failures.


As the nation’s population of individuals over the age of 65 is expected to
reach 84 million by 2050, addressing these challenges becomes increasingly
important, requiring coordination across multiple sectors and levels of
government. Innovations are needed to produce improvements in care
delivery; better communication between clinicians, patients and families; greater
uptake of advance care planning tools; and payment systems and policies
that support patient needs and preferences. 


The July 2017 issue of Health Affairs, “Advanced Illness and End-of-Life Care”
includes a comprehensive look at these issue and others. In addition, HA
is hosting a forum at the National Press Club on
Tuesday, July 11.


Topics covered will include:

  • Care At The End Of Life
  • Financing & Spending
  • Quality Of Care &
    Patient Preferences
  • Hospice & Palliative
    Care

The program will
feature the following presenters:

  • Melissa Aldridge, Associate
    Professor, Department of Geriatrics and Palliative Medicine, IcahnSchool
    of Medicine at Mount Sinai, on Epidemiology And Patterns Of Care At The
    End Of Life:Rising Complexity, Shifts In Care Patterns And Sites of Death
  • Rachelle E. Bernacki,
    Director of Quality Initiatives, Psychosocial Oncology and PalliativeCare,
    Dana Farber Cancer Institute; Assistant Professor, Harvard Medical School;
    and Associate Director, Serious Illness Care Program, Ariadne Labs, on A
    Systematic Intervention To Improve Serious Illness Communication In
    Primary Care
  • Julie Bynum, Associate
    Professor Geisel School of Medicine, Dartmouth, on High-Cost Dual Eligible
    Service Use Demonstrates Need For Supportive And Palliative Models Of Care
  • Janet Corrigan, Chief
    Program Officer for Patient Care, Executive Vice President, Gordon and
    Betty Moore Foundation
  • Katherine Courtright,
    Instructor of Medicine, Division of Pulmonary, Allergy, and Critical Care
    Medicine University of Pennsylvania Health System on Approximately One In
    Three US Adults Completes Any Type Of Advance Directive For End-Of-Life
    Care
  • Robrecht De Schreye,
    Researcher, End of Life Care, University of Brussels, on Applying
  • Quality Indicators From
    Linked Databases To Evaluate End-Of-Life Care For Cancer Patients In
    Belgium
  • Rachel Dolin, Fellow, David
    A.

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

Genetic Fingerprints and National Security

by Beau P. Sperry, Megan Allyse & Richard R. Sharp

Biometric surveillance is rapidly becoming an integral component of national security policy and practice. Biometric surveillance can include fingerprinting, facial and voice recognition, and iris scans. In 2002, in response to the September 11th attacks, the United States passed the Enhanced Border Security and Visa Entry Reform Act, which requires visa applicants to submit ten fingerprints to a national security database. Japan has been collecting fingerprints from its visitors since 2007 and many European nations are following suit, including the United Kingdom. Singapore began fingerprinting visitors in 2016, while the United Arab Emirates has gone a step further and now collects iris scans. Across the globe, national biometric databases are expanding, such as India’s Aadhaar program, which has gathered fingerprints and iris scans on more than one billion Indian citizens.

In recent years, countries like Kuwait have expanded biometric surveillance to include genetic data. In 2015, the Kuwaiti government enacted a law mandating the collection and retention of DNA samples from all citizens, residents, and travelers to Kuwait. The law was passed in response to a suicide bombing at a Shia mosque in Kuwait City that killed twenty-seven individuals and wounded 227 more. The goal of the law is to support national efforts to identify terrorists and to provide a resource for the identification of human remains in the aftermath of a major terrorist attack. Such laws signal increasing awareness of the potential utility of DNA analysis in national surveillance and security activities.

Unlike other identification methods, DNA provides a unique, unalterable, and easily obtained means of identification: even a small buccal swab can provide identifiable DNA for years.

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

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

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

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

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

In the Journals–March 2017, Part II by Julia Kowalski

This is Part II of March’s article round-up. You can find part I here.

In addition to the articles below, Theory, Culture and Society features an interview with Michel Foucault from 1983.

New Genetics and Society

Everything and nothing: regulating embryo research in Canada

Alana Cattapan & Dave Snow

This article examines how medical and scientific professionals experience and engage with the governance of embryo research in Canada. Drawing on the history of embryo regulation in Canada and the findings of a survey conducted with lab directors in Canadian fertility clinics, we identify a disjuncture between the rules established by legislation, regulations, and research ethics guidelines and the real-life experiences of professionals in the field. This disjuncture, we argue, is the result of both the absence of implementation mechanisms that would give substance to the governing framework, as well as an inability on the part of medical and scientific professionals to engage in robust self-regulation. Overall, we demonstrate that in an ethically charged and highly technical area of policy-making like embryonic research, clarity about the roles and responsibilities of government and professionals in policy-making and implementation is critical to effective governance.

Not just about “the science”: science education and attitudes to genetically modified foods among women in Australia

Heather J. Bray & Rachel A. Ankeny

Previous studies investigating attitudes to genetically modified (GM) foods suggest a correlation between negative attitudes and low levels of science education, both of which are associated with women. In a qualitative focus group study of Australian women with diverse levels of education, we found attitudes to GM foods were part of a complex process of making “good” food decisions, which included other factors such as locally produced, fresh/natural, healthy and nutritious, and convenient.

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.