Tag: women

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

Creative Minds: Preparing for Future Pandemics

Jonathan Abraham / Credit: ChieYu Lin

Growing up in Queens, NY, Jonathan Abraham developed a love for books and an interest in infectious diseases. One day Abraham got his hands on a copy of Laurie Garrett’s The Coming Plague, a 1990s bestseller warning of future global pandemics, and he sensed his life’s calling. He would help people around the world survive deadly viral outbreaks, particularly from Ebola, Marburg, and other really bad bugs that cause deadly hemorrhagic fevers.

Abraham, now a physician-scientist at Brigham and Women’s Hospital, Boston, continues to chase that dream. With support from an NIH Director’s 2016 Early Independence Award, Abraham has set out to help design the next generation of treatments to enable more people to survive future outbreaks of viral hemorrhagic fever. His research strategy: find antibodies in the blood of known survivors that helped them overcome their infections. With further study, he hopes to develop purified forms of the antibodies as potentially life-saving treatments for people whose own immune systems may not make them in time. This therapeutic strategy is called passive immunity.

Already, Abraham has begun collecting blood samples from survivors of Ebola, Marburg, and other hemorrhagic fevers. The next step—and it can be a long and tedious one—is to isolate the B immune cells that produce the antibodies responsible for fighting each of the viruses. When he finds one, Abraham will then identify and sequence the specific immunoglobulin genes encoding those antibodies in the appropriate B cell.

Having those DNA sequences in hand, Abraham can make large quantities of the antibodies, allowing him to study their ability to neutralize the viruses in lab dishes and infected animals.

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

Global Health Policy: Trump and the Reinstatement of the Global Gag Rule

By: Jorge Luis Rivera-Agosto

On January 23, 2017, President Trump signed a Presidential Memorandum reinstating the so-called Mexico City Policy. The Memorandum conditions U.S. global health and family planning assistance to a strict rule that precludes foreign non-governmental organizations (also known as “NGOs”) from promoting or performing abortion as a method of family planning. Also known as the “global gag rule,” this policy represents a blow specifically to women’s health worldwide. Thanks to this new action, it will become harder, like in past years when it was in effect, to have resources to support family planning and reproductive health services, such as “family counseling, contraceptive commodities, condoms, and reproductive cancer screenings.” Even though the U.S. government won’t retract from the Memoranda until this Administration ceases, global efforts should be made to ameliorate the negative effects the new policy will cause.

The Mexico City Policy was first enacted by President Reagan in 1984 – and at the time, it represented an expansion of existing legislative restrictions of the use of U.S. funds for abortions internationally. It was then rescinded by President Clinton in 1991; reinstated by President Bush in 2001; rescinded by President Obama in 2009; and reinstated and expanded by President Trump in 2017. The policy requires foreign NGOs “to certify that they will not perform or actively promote abortion as a method of family planning, using funds from any source (including non-U.S. funds), as a condition for receiving U.S. government global family planning assistance and any other U.S. global health assistance.” The reason given to enact such policy was that the U.S.

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

Mari Mikkola, The Wrongs of Injustice: Dehumanization and its Role in Feminist Philosophy, Oxford University Press, 2016

Mari Mikkola identifies three primary forms of social injustice—oppression, domination, and discrimination—and asks what makes them wrong. She argues that feminist philosophy has thus far focused heavily on gender as a lens or anchor through which to understand and respond to injustice. In Mikkola’s view, this orientation around gender (and what she terms “the gender controversy”) is limiting feminist philosophers’ theoretical engagement with the roots of injustice. To remedy this problem, she builds a case for moving toward a more broadly humanist conception of injustice. The humanist feminism that she puts forth centers dehumanization as a way to theorize injustice; dehumanization, for Mikkola, is the very foundation of injustice.

Following an introductory chapter that frames Mikkola’s approach and argument, the book is divided into two parts. The first part of the book is dedicated to articulating Mikkola’s argument for moving beyond the “gender controversy” in feminist philosophy. She explains that the perspectives debated in the gender controversy produce two kinds of puzzles: one semantic, the other ontological. The semantic puzzle asks: “Given that ordinary language users tend not to distinguish sex and gender (treating ‘woman’ largely as a sex term, or a mixture of social and biological features), what precisely are feminists talking about when they talk about ‘women’? What are the necessary and sufficient conditions that the concept woman encodes, if any such conditions exist to begin with?” (28). The ontological puzzle, by contrast, is concerned with: “How should we understand the category of women that is meant to undergird feminist political solidarity, if there are no necessary and sufficient conceptual conditions underlying our gender talk?

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

Rape, disability, and gender: A response to McMahan and Singer’s op-ed on the Anna Stubblefield case

Unfortunately, there have been numerous cases of sexual
harassment and sexual assault in academia and particularly in more
male-dominated fields, including my home field of philosophy. In these cases,
professors use their position of prestige and power to sexually harass and
abuse their students. UC Berkeley philosophy professor John
Searle
is just the most recent example. To my knowledge, all of these cases
have involved male professors victimizing female students. The lone exception
is Anna
Stubblefield
, a former professor of philosophy at Rutgers. Here is a
summary of her case from Current Affairs

At issue is the case of Anna
Stubblefield, a Rutgers University philosophy professor convicted of sexually
assaulting her mentally disabled pupil, and sentenced to 12 years in prison.
The case is, to say the least, extremely unusual. The student, D.J., was a
severely impaired 30 year old man with cerebal palsy, who had never spoken a
word in his life and communicated through “screams” and “chirps.” Stubblefield
acted as his personal tutor, using a discredited pseudoscientific technique to
elicit what she insisted were complex communications from D.J. Eventually,
based on what she believed D.J. wanted, Stubblefield began engaging in sex acts
with him, having become romantically attracted to him over the course of her
time assisting him.  

Stubblefield’s case is not only different because she is a
woman and her victim is a man, but also because she is one of the few
professors to go through the legal system and be convicted.

There are
many complexities to Stubblefield’s case and I don’t have the space to address
them all here.

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

Texas ‘Wrongful Birth’ Legislation

On March 21st, the Texas Senate passed SB 25, which eliminates “wrongful birth” as a cause of action for malpractice suits.  The text of the bill states, “A cause of action may not arise, and damages may not be awarded, on behalf of any person, based on the claim that but for the act or omission of another, a person would not have been permitted to have been born alive but would have been aborted. […]  This section may not be construed to eliminate any duty of a physician or other health care practitioner under any other applicable law.”

The bill’s supporters contend that the legislation “reverses a decades-old injustice and bad public policy that devalues babies, both unborn and born, who have a disability,” and removes pressure that physicians may feel to recommend abortions in order to preempt lawsuits.

However, opponents of the bill argue that it gives physicians the clearance to lie to patients about fetal health to prevent them from having an abortion. One activist argues that the legislation provides physicians the “opportunity to impose the religious beliefs on pregnant women by withholding information about the condition of their fetus and depriving them of making an informed decision about continuing with their pregnancy.”  The text of the bill, however, clearly precludes such a scenario.

In overturning wrongful birth precedent, this bill recognizes and defends the dignity of individuals with disabilities from the morally backwards concept of “wrongful birth.”

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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 ethnographic case: series conclusion by Emily Yates-Doerr

Editors note: This entry concludes the series “The Ethnographic Case” which ran every other Monday between June 2015 and July 2016. The bookCase, which holds 27 cases, can be accessed here.

One day, early on in the series, we received two submissions. Their similar anatomy was striking. Each featured a medical waiting room. Someone entered the space with a gift for the clinical personnel, the gift was accepted, and something shifted in the resulting care.

In Aaron Ansell’s case, set within gardens of an informal clinic in Piauí, Brazil, the gift was a small satchel of milk. Rima Praspaliauskiene’s was set in a Lithuanian public hospital and the gift was a rich chocolate cake. Aaron, who works and teaches on legal orders, analyzed the exchange as a challenge to hospital norms of equalitarianism. He helped us to see how the give-and-take of milk interrupts the requirements of a deracinated liberal democracy, offering instead the warm sociality of personal affinity. Rima, who focuses on medical care and valuing, used the object of the cake to query the social scientist’s impulse to explain why people do what they do. She shows us how this impulse may rest upon the linearity and equivalence of rational calculation, uncomfortably treating sociality as a commodity.

The juxtaposition of these submissions is emblematic – a case, if you will – of something we have seen throughout this series: the art of ethnographic writing resides in a relation between what is there and what is done with it.

Beginnings

We might trace the origin of the series to a business meeting at the AAAs, when we offered the idea of “the ethnographic case” for a Somatosphere series.

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

Penny-Foolish

April 07, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

Penny-Foolish

The 2018 federal budget battle has barely begun and already critics – including myself – are questioning the wisdom of Trump’s proposal to drastically cut key agencies like the US Department of State, Health and Human Services, and the Environmental Protection Agency in order to build a wall that no one wants, to buy fighter jets that no one needs, and to give tax breaks that no one earned.

The Trump Administration claims that the President’s proposal will make Americans safer, healthier, and wealthier, but the unprecedented cuts and reallocations in this budget are likely to make us poorer, sicker, and endangered. They are also likely to do irreparable harm to America’s image overseas. Although Ronald Reagan famously described America as “a shining city upon a hill whose beacon light guides freedom-loving people everywhere,” we will soon be seen as the exact opposite as the very programs that save lives, promote equality, combat poverty, and advance human rights – the very values and ideals that Americans cherish – are dismantled.

Consider, for example, Trump’s plan to cut funding from a program that provides life-saving treatment to those living with HIV/AIDS across the globe. Known as the President’s Emergency Plan for AIDS Relief (PEPFAR), that program was created in 2003 by then President George W. Bush. It would not be hyperbole to describe PEPFAR as President Bush’s greatest legacy, redeeming an otherwise disastrous administration best known for embroiling America in an unjust and seemingly unending war in the Middle East and for trigger the worst financial disaster since the Great Depression.

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

20 Years of Death with Dignity in USA

The nation’s first “death with dignity” law turns 20 this year.  Since the six other states have affirmatively legalized medical aid in dying.


A new analysis published in JAMA Oncology is taking a look back at how the law has been utilized in Oregon since it went into effect in 1997. 

  • Total Usage – A total of 1545 prescriptions were written, and 991 patients died by using legally prescribed lethal medication. 
  • Age & Gender – Of the 991 patients, 509 (51.4%) were men and 482 (48.6%) were women. The median age was 71 years (range, 25-102 years). 
  • Increase – The number of prescriptions written increased annually (from 24 in 1998 to 218 in 2015), and the percentage of prescription recipients dying by this method per year averaged 64%. 
  • Diagnoses – Of the 991 patients using lethal self-medication, 762 (77%) recipients had cancer, 79 (8%) had amyotrophic lateral sclerosis, 44 (4.5%) had lung disease, 26 (2.6%) had heart disease, and 9 (0.9%) had HIV. 
  • Mental Health Screening – Of 991 patients, 52 (5.3%) were sent for psychiatric evaluation to assess competence. 
  • Race & Hospice – Most (953; 96.6%) patients were white and 92.2% were in hospice care. 
  • Insurance & Education – Most (118, 92.2%) patients had insurance and 92 (70.8%) had at least some college education. Most (94%) died at home. 
  • Duration – The estimated median time between medication intake and coma was 5 minutes (range, 1-38 minutes); to death it was 25 minutes (range, 1-6240 minutes). 
  • Complications – Thirty-three (3.3%) patients had known complications. 
  • Motivation – The most common reasons cited for desiring PAD were activities of daily living were not enjoyable (89.7%) and losses of autonomy (91.6%) and dignity (78.7%); inadequate pain control contributed in 25.2% of cases.

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.