Tag: cystic fibrosis

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

Will Healthcare Inequality Cause Genetic Diseases to Disproportionately Impact the Poor?

Imagine now, that in the future, being poor also meant you were more likely than others to suffer from major genetic disorders like cystic fibrosis, Tay–Sachs disease, and muscular dystrophy. That is a future, some experts fear, that may not be all that far off

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

Another Milestone in the Cystic Fibrosis Journey

Caption: Two-year-old Avalyn is among the cystic fibrosis patients who may be helped by targeted drugs.
Credit: Brittany Mahoney

As NIH Director, I often hear stories of how people with serious diseases—from arthritis to Zika infection—are benefitting from the transformational power of NIH’s investments in basic science. Today, I’d like to share one such advance that I find particularly exciting: news that a combination of three molecularly targeted drugs may finally make it possible to treat the vast majority of patients with cystic fibrosis (CF), our nation’s most common genetic disease.

First, a bit of history! The first genetic mutation that causes CF was discovered by a collaborative effort between my own research lab at the University of Michigan, Ann Arbor, and colleagues at the Hospital for Sick Children in Toronto—more than 25 years ago [1]. Years of hard work, supported by the National Institutes of Health and the Cystic Fibrosis Foundation, painstakingly worked out the normal function of the protein that is altered in CF, called the cystic fibrosis transmembrane regulator (CFTR). Very recently new technologies, such as cryo-EM, have given researchers the ability to map the exact structure of the protein involved in CF.

Among the tens of thousands of CF patients who stand to benefit from the next generation of targeted drugs is little Avalyn Mahoney of Cardiff by the Sea, CA. Just a few decades ago, a kid like Avalyn—who just turned 2 last month—probably wouldn’t have made it beyond her teens. But today the outlook is far brighter for her and so many others, thanks to recent advances that build upon NIH-supported basic research.

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.

Bioethics News

The Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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

UK report on prenatal testing calls for ban on sex disclosure

A new report by the UK’s Nuffield Council on Bioethics, “Non-invasive prenatal testing: ethical issues”, has probably pleased no one by trying to steer a course between banning abortions for sex-selection and allowing abortions for the most common kind of foetal abnormalities.

NIPT is a major breakthrough. It uses a blood sample taken from the pregnant woman and can be done from 9 or 10 weeks of pregnancy. It analyses DNA from the placenta that circulates in the woman’s blood to estimate the chance that the fetus has Down’s, Edwards’ or Patau’s syndromes, as well as single-gene disorders like cystic fibrosis and achondroplasia. It can also determine its sex.

The test is currently available in the UK through private hospitals and clinics, and in some NHS (ie, public) hospitals. Last year, the UK Government announced that from 2018, the NHS will offer NIPT to pregnant women who have been found through initial screening to have at least a 1 in 150 likelihood of having a fetus with Down’s, Patau’s or Edwards’ syndromes.

The report says that NIPT should lead to fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage. In the case of Down syndrome fetuses, 200 more would be identified (with 90% or more being aborted) and 17 fewer miscarriages of healthy foetuses because of invasive tests.

In addition, the Nuffield Council calls for a moratorium on the use of NIPT in sequencing the whole genome of fetuses; it wants a ban on its use in finding out the sex of the fetus because that would lead to sex-selective abortion.

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

Ethics & Society Newsfeed: February 17, 2017

Image via 

Politics

Trump Ethics Monitor: Has The President Kept His Promises?
To track Trump’s ethics-related promises, NPR checked debate transcripts, campaign speeches and press conferences

Trump’s South Florida estate raises ethics questions
Ethics questions and possible conflicts surrounding President Donald Trump’s frequent trips to his sprawling Mar-a-Lago property, especially in regards to the invitation of Japanese Prime Minister, Shinzo Abe, over the weekend; a trip Trump pledged to pay for.

Should Jeff Sessions Recuse Himself From the Russia Inquiries?
Bruce Green, director of the Louis Stein Center for Law and Ethics at Fordham University, comments on whether Attorney General, Jeff Sessions should recuse himself from investigations involving former National Security Adviser, Michael Flynn and Russian hacking.

Trickle-Down Ethics at the Trump White House
Federal ethics guidelines forbid White House officials from using public position and power for their own private gain or to promote the private business interests of others. Trump Administration actions to be reviewed by the White House counsel and by the Office of Government Ethics.

Government Watchdog Presses Jason Chaffetz To Investigate Kellyanne Conway Himself
Jason Chaffetz (R-Utah), Chairman of the House Oversight Committee, requested that The Office of Government Ethics (OGE) investigate Kellyanne Conway’s possible breach of federal ethics rules, indicating that the Chairman may be trying to take pressure off his own committee, which has the most authority to investigate the matter.

Ethics Watchdog Denounces Conway’s Endorsement of Ivanka Trump Products
Federal government’s chief ethics watchdog calls for White House adviser, Kellyanne Conway, to be disciplined after publically endorsing Ivanka Trump’s product line.

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

Using CRISPR for Human Gene Editing – NOT for Designing Babies

By: Ashwini Nagappan

Recently, the National Academy of Sciences and the National Academy of Medicine published a report on the use of CRISPR technology for gene editing. The need for such a report stems from the controversy of using CRISPR to prevent congenital diseases versus to allow for cosmetic enhancements. Additionally, there is a fear with germline editing that future generations will inherit the genetic modifications and perhaps, change the existence of the human species.

CRISPR (Clustered Regularly Interspaced Short Palindromic Repeat) is an easy and cheap gene editing tool that allows for DNA editing without causing adverse side effects. It was originally intended to act as a bacterial shield; the bacteria would recognize foreign genetic material and snip them out. But now, CRISPR is being used for genetic editing. It employs the Cas-9 enzyme to target a specific gene sequence to remove or add new ones around it.

The report supposes that if highly regulated, gene editing could be used in the near future to treat diseases such as cystic fibrosis, Huntington’s disease, and ALS. Yet, scientists, researchers, and bioethicists all over the world have raised ethical concerns over the use of the technology. In accordance, the report only recognizes modifications as acceptable if they prevent babies from acquiring genes known for their deleterious consequences.

In the US, federal funding is not given to experiments involving embryo development, but the report endorses it. Further, countries such as the UK, Sweden and China are moving forward with their germline genome editing research. Regardless of the statements from the report, public engagement with the features of gene editing is essential to comprehend how the society as whole ethically regards the technology.

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

U.S. Science Advisors Outline Path to Genetically Modified Babies

February 14, 2017

(Scientific American) – Scientists should be permitted to modify human embryos destined for implantation in the womb to eliminate devastating genetic diseases such as sickle-cell anaemia or cystic fibrosis — once gene-editing techniques advance sufficiently for use in people and proper restrictions are in place. That’s the conclusion of a February 14 report from the US National Academies of Science, Engineering, and Medicine. The 261-page document follows a 2015 National Academies summit that brought together scientists, ethicists, legal experts and patient groups from around the world. Meeting organizers wanted to survey concerns about human germline editing: genetic modifications to embryos, sperm or egg cells that can be passed on to offspring.

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.