Tag: bioethics

Bioethics Blogs

Mental Privacy in the Age of Big Data

By Jessie Ginsberg
Jessie Ginsberg is a second year student in the Master of Arts in Bioethics program and a third year law student at Emory University. 

A father stood at the door of his local Minneapolis Target, fuming, and demanding to speak to the store manager. Holding coupons for maternity clothes and nursing furniture in front of the manager, the father exclaimed, “My daughter got this in the mail! She’s still in high school, and you’re sending her coupons for baby clothes and cribs? Are you trying to encourage her to get pregnant?”
Target was not trying to get her pregnant. Unbeknownst to the father, his daughter was due in August.  
In his February 16, 2012 New York Times article entitled, “How Companies Learn Your Secrets,” Charles Duhigg reported on this Minneapolis father and daughter and how companies like Target use marketing analytics teams to develop algorithms to anticipate consumers’ current and future needs. Accumulating data from prior purchases, coupon use, surveys submitted, emails from Target that were opened, and demographics, a team of analysts render each consumer’s decision patterns into neatly packaged data sets tailored to predict their future buying choices. 

Flash forward to 2017, a time where online stores like Amazon dominate the market and cell phones are reservoirs of personal information, storing intimate details ranging from your location to your desired body weight to your mood. Furthermore, data analysis algorithms are more sophisticated than ever before, gobbling up volumes of information to generate highly specific and precise profiles of current and potential consumers.

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

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

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

GBI Summer School on Global Bioethics, Human Rights and Public Policy

GBI Summer School on Global Bioethics, Human Rights and Public Policy –  Our First Educational Field Trips

by Anaeke Paschal Chinonye

I am a Ph.D. in Philosophy, at the University of Lagos, Nigeria. I am the winner of a partial scholarship which gave me the possibility to attend this unique and very interesting program hosted by GBI.

Friday, June, 23, was a day for field trips. First to the United Nations Headquarters and then to Memorial Sloan Kettering Cancer Centre. Initially, I thought field trips would be mere social outings and sightseeing with opportunities to take a lot of pictures. The trips proved far more than that; it was rather educational trips loaded with significance. As I got to the main entrance, some basic facts about the UN which I learnt during my Master of International Law and Diplomacy class in the University of Lagos, Nigeria began to flash in my mind. Chiefly, a commitment to international peace and security.

One of my colleagues called me across the road to take pictures, immediately I crossed the road, my eyes went straight to an inscription from the Prophet Isaiah: They shall beat their swords into plough-shares and their spears into pruning hooks; nation shall no longer lift up sword against nation. Neither shall they learn war anymore. At this point, though the world is still ravaged by wars, terrorism, and insecurity, I felt the UN has a divine mandate which thus must be commended and supported.

Now, after the security check, as I walked into the compound, still lost in wondering contemplation of the critical need for global peace and security, I spotted the statue of a gun with a tied barrel…signaling no more wars.

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 case for an Indigenous Bioethics

Indigenous communities in the Americas experience a disproportionate incidence of illness and disease compared to the general population. They also possess sophisticated ethical traditions which diverge and not infrequently conflict with Western-oriented bioethics. This culture gap between patient, provider and ethicist is no small public health concern—it can foster feelings of alienation and distrust which compromise the relationship between those in need of care and those able to offer it. Research ethicists have already made considerable efforts to bring sensitivity for aboriginal cultural mores into their discipline, but bioethicists have been slower out of the gate.
This is the argument made by an article last year in the American Journal of Bioethics. The authors Jaro Kotalik and Gerry Martin are well-situated to make such claims—Kotalik is a bioethicist and Martin is an Elder of the Mattagami Nation. The pair attempt to draw parallels between classical systems of virtue ethics and the Ojibwa narrative of the Seven Grandfathers, a fable with the central aim of transmitting the community’s moral compass from one generation to the next. Kotalik & Martin hope this exercise will show that aboriginal and mainstream bioethical frameworks are indeed, to quote First Nations intellectual Leroy Little Bear, “jagged worldviews colliding”. They share parallels, but they are far from perfect complements. Real work must therefore be done to smooth the contact point between them.
Kotalik & Martin make a provocative argument, but they paint a hazy picture of what this work entails. They doubt the possibility of an “aboriginal bioethics”, but they do speak of an “ethical framework” for the provision of healthcare in indigenous communities along the lines of what has been achieved in human 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 News

UN Says World’s Population Will Reach 9.8 Billion By 2050

June 23, 2017

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The document tallies the current population at 7.6 billion people, up from 7.4 billion just two years ago.

This year’s count means the world added roughly 1 billion people over the last dozen years. It will take 13 years to add the next billion, according to the report. The planet is expected to have 8.6 billion people in 2030, and 9.8 billion by 2050.

A decade ago, the world’s population was growing by 1.24 percent per year; today it is 1.1 percent.

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NPR The Two-Way

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Source: Bioethics Bulletin by the Berman Institute 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 News

Insurers Battle Families Over Costly Drug for Fatal Disease

June 23, 2017

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Nolan and Jack Willis, twins from upstate New York, and just 10 other boys took part in a clinical trial that led to the approval last fall of the very first drug to treat their rare, deadly muscle disease.

Now the Willis boys are again test cases as a different type of medical question comes to the fore: whether insurers will cover the controversial drug, Exondys 51, which can cost more than $1 million a year even though it’s still unclear if it works.

The boys’ insurer, Excellus BlueCross BlueShield, refused to cover the cost of the drug because the twins, who are 15, can no longer walk. Their disease, Duchenne muscular dystrophy, overwhelmingly affects boys and causes muscles to deteriorate, killing many of them by the end of their 20s.

“I’m cycling between rage and just sadness,” their mother, Alison Willis Hoke, said recently, on the day she learned that an appeal for coverage had been denied. For now, the company that sells the drug, Sarepta Therapeutics, is covering the treatment’s costs, but Mrs. Hoke does not know how long that will last.

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NYTimes

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Source: Bioethics Bulletin by the Berman Institute 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 News

The United States Government has presented an amend to abolishe Planned Parenthood government subsidies

The current Government of the United States has presented an amend to the “Affordable Care Act“, with the result that they will not longer awarding Planned Parenthood 500 million Euros annually, around two fifths of their total budget. Planned Parenthood has 57 local affiliates that operate around 650 health centres in the United States. In 2015, the organisation received $553 million from federal funds, $309 million from private insurers, $353 million in donations and $80 million from other sources. According to their own figures, 2.5 million people use their facilities every year, and they believe that 1 in 5 American women has visited a centre at least once in her life (JAMA 177; 307-308, 2017).

Official reasons to defund Pllaned Parethood, “We don’t want to commit taxpayer funding for abortion, and Planned Parenthood is the largest abortion provider,” House Speaker Paul Ryan said during a CNN town hall .

Planned parenthood government subsidies to promote abortion also in other countries.

A step has been made in last februay when President Trump signed an executive order barring federal funds from organizations that promote abortion around the world, including the International Planned Parenthood Federation.

Photo The MQ

La entrada The United States Government has presented an amend to abolishe Planned Parenthood government subsidies aparece primero en Bioethics Observatory.

Source: Bioethics Observatory.

This article was originally published by the Bioethics Observatory of the Catholic University of Valencia. Up-to-date news and reports from the Bioethics Observatory at the Catholic University of Valencia (Spain), covering a wide range of bioethical issues including stem cell research, abortion, assisted suicide and much more.

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

Transsexual Charlotte Goiar, against gender ideology

 Transsexual person against gender ideology: “It is not normal” for the LGTBI lobby to impose gender ideology in the classroom, because it goes against the freedom of parents to educate their children”

Charlotte Goiar which sex change was permitted by the Spanish Supreme Court, stated that “The term ‘transsexual‘ is an ambiguous label politicised by the LGBT lobby”. Goiar eventually underwent surgery at age 43. She says that, “Less than one percent of the population suffer from these types of disorders. But gay, lesbian, transsexual and bisexual associations, which are subsidised, want to impose their assumptions on society”. For Charlotte, “it is not normal” for the LGTBI lobby to impose gender ideology in the classroom, because it goes against the freedom of parents to educate their children (Laura Daniele. ABC 10/03/2017).

La entrada Transsexual Charlotte Goiar, against gender ideology aparece primero en Bioethics Observatory.

Source: Bioethics Observatory.

This article was originally published by the Bioethics Observatory of the Catholic University of Valencia. Up-to-date news and reports from the Bioethics Observatory at the Catholic University of Valencia (Spain), covering a wide range of bioethical issues including stem cell research, abortion, assisted suicide and much more. General interest and specialised topical articles with ethical implications, based on the latest research findings from some of the world's top medical and scientific journals.

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 most permissive assisted suicide country is Switzerland

Assisted suicide is legal in Switzerland, and moreover, is accessible without having to provide any reason. There are no rules that require the participation of a doctor, and most suicides are assisted by associations that support the right to a dignified death. Even though, in Europe, euthanasia and assisted suicide are permitted in Holland, Belgium and Luxemburg, and in some states in the United States, the situation of assisted suicide facilities in Switzerland is unique because of the facilities that exist specifically for it. A recent study recorded 611 cases in a centre in Zurich, which is where most assisted suicides occurred between 2008 and 2012 (see HERE).

Euthanasia and assisted suicide. Attitudes and practice in countries where they have been legalised

Photo ABC

La entrada The most permissive assisted suicide country is Switzerland aparece primero en Bioethics Observatory.

Source: Bioethics Observatory.

This article was originally published by the Bioethics Observatory of the Catholic University of Valencia. Up-to-date news and reports from the Bioethics Observatory at the Catholic University of Valencia (Spain), covering a wide range of bioethical issues including stem cell research, abortion, assisted suicide and much more. General interest and specialised topical articles with ethical implications, based on the latest research findings from some of the world's top medical and scientific journals.

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

Study shows for the first time that incidence of chromosomal abnormalities are strong associated with IVF – assisted reprodution practices

The presence of chromosomal abnormalities in embryos is very high following hormonal ovarian stimulation and in vitro fertilisation (IVF), occasionally exceeding 50%. Regardless of other medical reasons, part of these are thought to be caused by the type of treatment used to produce the embryos. This has now been evaluated for the first time in Human Reproduction, showing “a strong association between center-specific ART [artificial reproduction technologies] treatment practices and the incidence of chromosome abnormality in human embryos generated from human cycles“.

Photo Fertility Care Dublin

La entrada Study shows for the first time that incidence of chromosomal abnormalities are strong associated with IVF – assisted reprodution practices aparece primero en Bioethics Observatory.

Source: Bioethics Observatory.

This article was originally published by the Bioethics Observatory of the Catholic University of Valencia. Up-to-date news and reports from the Bioethics Observatory at the Catholic University of Valencia (Spain), covering a wide range of bioethical issues including stem cell research, abortion, assisted suicide and much more. General interest and specialised topical articles with ethical implications, based on the latest research findings from some of the world's top medical and scientific journals.

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.