Tag: genetic testing

Bioethics News

Even Though Genetic Information Is Available

With the availability of home genetic testing kits from companies such as “23andMe” and “Ancestry DNA,” more people will be getting information about their genetic lineage and what races and ethnicities of the world are included in their DNA

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

DTC Genetic Risk Reports Back on Market

By Kayte Spector-Bagdady, JD, MBE & Michele Gornick, PhD, MA On Thursday April 6, the FDA announced that it will allow the direct-to-consumer (DTC) genetic testing company 23andMe to market “Genetic Health Risk” (GHR) tests for 10 diseases or conditions including … 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

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.

Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.

The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.

From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):

Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!

From Kathleen’s mother’s talk:

You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make.

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

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.”

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

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.”

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 Blogs

How private should genetic information be?

One of the issues regarding genetic testing is the privacy of that information. It has been recognized for some time that employers and others could use genetic information in ways that would cause problems for those whose genetic information they were able to access. Because of that the federal Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA) prohibit employers from asking employees to have genetic testing done. According to a recent article in the National Law Review, there is a bill currently in Congress, HR 1313 that would exempt employers from the restrictions of the GINA and ADA if the testing is being done as part of a workplace wellness program. Employers would be able to require employees to have genetic testing done as a part of the program and employees who refused would be subject to a significant increase in their health insurance premiums.

I think there are significant moral concerns about this change. Privacy regarding medicine information and genetic information in particular is important. People should be able to choose who they allow to have that information and they should be able to choose whether they want to undergo genetic testing. There are situations in which people would prefer not to know some things. There are limits to privacy and when another person is act risk of harm. Privacy may be less important than preventing harm to that person. However, workplace wellness programs which may be well meaning and may provide some benefit to the employees are being done as much for the benefit of the employer to try to lower health care costs as they are for the employees.

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: March 10, 2017

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Politics

White House Slammed by Federal Ethics Chief for Not Disciplining Kellyanne Conway
U.S. government’s official ethics watchdog blasted White House for not taking disciplinary action against senior counselor Kellyanne Conway for promoting Ivanka Trump’s products on TV

Trump’s Ethics Order Seen as Boost for Shadow Lobbying
President Trump’s speech to the joint session of Congress on Tuesday explains executive order to ban lobbying for five years for officials who leave office – addresses the ethics of “draining the swamp”

George W. Bush’s ethics lawyer says Jeff Sessions’ denial of Russia talks ‘a good way to go to jail’
Alleged ethics violations Jeff Sessions may have made when he claimed under oath that he “did not have communications with the Russians”

ACLU lawyer files ethics complaint against Sessions over Russia testimony: report
An American Civil Liberties Union (ACLU) lawyer, Christopher Anders, formally filed an ethics complaint against Attorney General Jeff Sessions over his testimony to the Senate Judiciary Committee denying any contact with Russian officials

Trump’s team nixed ethics course for White House staff
White House staff has received no ethics training under the Trump transition team and now presidency

Medical Ethics

House Republicans would let employers demand workers’ genetic test results
Bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars; employers see that genetic and other health information

Prisoners with serious mental health problems face urgent treatment delays
Prisoners in the UK are supposed to receive mental health services after being referred to such a unit within 14 days and new official numbers have indicated that regulations are not being followed

New pregnancy testing technique needs limits say ethics body
Press release from the Nuffield Council on Bioethics explores the ethics of Non-Invasive Prenatal Testing (NIPT) and explains why they are calling for a moratorium on the use of the new technology

Ethical Implications of User Perceptions of Wearable Devices
Wearable devices can save time at medical appointments and may even save lives – ethical implications of having large amounts of personal information stored in devices that are shared with third parties

When Evidence Says No, But Doctors Say Yes
Medical costs increasing and patient benefits are declining  – ethical conundrum of why medical professionals continue to prescribe unnecessary treatment, and calls for responsible regulation

States Wrestle With Legalizing Payments For Gestational Surrogates
Legislators proposed a bill that would regulate gestational surrogacy — potentially adding legal oversight to fertility clinics that facilitate these pregnancies

Environmental Ethics

EPA environmental justice leader resigns, amid White House plans to dismantle program
Key environmental justice leader at the Environmental Protection Agency has resigned, saying recent budget proposal to defund work would harm the people who most rely on the EPA

Why Won’t American Business Push for Action on Climate?

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: March 10, 2017

Image via

Politics

White House Slammed by Federal Ethics Chief for Not Disciplining Kellyanne Conway
U.S. government’s official ethics watchdog blasted White House for not taking disciplinary action against senior counselor Kellyanne Conway for promoting Ivanka Trump’s products on TV

Trump’s Ethics Order Seen as Boost for Shadow Lobbying
President Trump’s speech to the joint session of Congress on Tuesday explains executive order to ban lobbying for five years for officials who leave office – addresses the ethics of “draining the swamp”

George W. Bush’s ethics lawyer says Jeff Sessions’ denial of Russia talks ‘a good way to go to jail’
Alleged ethics violations Jeff Sessions may have made when he claimed under oath that he “did not have communications with the Russians”

ACLU lawyer files ethics complaint against Sessions over Russia testimony: report
An American Civil Liberties Union (ACLU) lawyer, Christopher Anders, formally filed an ethics complaint against Attorney General Jeff Sessions over his testimony to the Senate Judiciary Committee denying any contact with Russian officials

Trump’s team nixed ethics course for White House staff
White House staff has received no ethics training under the Trump transition team and now presidency

Medical Ethics

House Republicans would let employers demand workers’ genetic test results
Bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars; employers see that genetic and other health information

Prisoners with serious mental health problems face urgent treatment delays
Prisoners in the UK are supposed to receive mental health services after being referred to such a unit within 14 days and new official numbers have indicated that regulations are not being followed

New pregnancy testing technique needs limits say ethics body
Press release from the Nuffield Council on Bioethics explores the ethics of Non-Invasive Prenatal Testing (NIPT) and explains why they are calling for a moratorium on the use of the new technology

Ethical Implications of User Perceptions of Wearable Devices
Wearable devices can save time at medical appointments and may even save lives – ethical implications of having large amounts of personal information stored in devices that are shared with third parties

When Evidence Says No, But Doctors Say Yes
Medical costs increasing and patient benefits are declining  – ethical conundrum of why medical professionals continue to prescribe unnecessary treatment, and calls for responsible regulation

States Wrestle With Legalizing Payments For Gestational Surrogates
Legislators proposed a bill that would regulate gestational surrogacy — potentially adding legal oversight to fertility clinics that facilitate these pregnancies

Environmental Ethics

EPA environmental justice leader resigns, amid White House plans to dismantle program
Key environmental justice leader at the Environmental Protection Agency has resigned, saying recent budget proposal to defund work would harm the people who most rely on the EPA

Why Won’t American Business Push for Action on Climate?

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.