Tag: methods

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Genome sequencing in foetal .This prenatal diagnosis arrises a new level of complexity to medical, family and social decisions

Regardless of the legal judgment that abortion deserves in different countries, any action that may induce or facilitate abortion is ethically unacceptable.

In 2012, a technique was developed that enabled the foetal genome to be determined in the first trimester of pregnancy, using a small sample of the mother’s blood (Nature 2012, 487,320-4. Erratum Nature 2012; 489,326). This attractive novel technique has opened up new medical possibilities, but also objective ethical questions. A recent article published in the New England Journal of Medicine (370; 195-197) discussed this topic.

There is no doubt that this new possibility adds a new level of complexity to medical, family and social decisions resulting from prenatal diagnosis.

As discussed in the article, information can be obtained on some foetal medical issues with the usual methods, such as chorionic villus sampling or amniocentesis. With genomic analysis however, information can not only be obtained on possible diseases, but also on types of autosomal recessive diseases (e.g. Tay-Sachs disease), or the risk that the future child will develop a disease such as diabetes or some type of cancer in adulthood, especially breast and ovarian cancer in women. Knowing the risks of future diseases can be used for the good of the foetus, if prenatal treatments can be applied, but also against their life if abortion is favoured.

This therefore raises several ethical questions, such as, “Should foetal genome studies be routinely offered to everyone?” or “Are parents entitled to know their future child’s genetic information?” One criterion that is probably essential to establish the ethicality of these practices, is that they are always used in the best interests of the child.

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.

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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.

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Huntington’s Disease: Gene Editing Shows Promise in Mouse Studies

My father was a folk song collector, and I grew up listening to the music of Woody Guthrie. On July 14th, folk music enthusiasts will be celebrating the 105th anniversary of Guthrie’s birth in his hometown of Okemah, OK. Besides being renowned for writing “This Land is Your Land” and other folk classics, Guthrie has another more tragic claim to fame: he provided the world with a glimpse at the devastation caused by a rare, inherited neurological disorder called Huntington’s disease.

When Guthrie died from complications of Huntington’s a half-century ago, the disease was untreatable. Sadly, it still is. But years of basic science advances, combined with the promise of innovative gene editing systems such as CRISPR/Cas9, are providing renewed hope that we will someday be able to treat or even cure Huntington’s disease, along with many other inherited disorders.

My own lab was part of a collaboration of seven groups that identified the Huntington’s disease gene back in 1993. Huntington’s disease occurs when a person inherits from one parent a mutant copy of the huntingtin (HTT) gene that contains extra repetitions, or a “stutter,” of three letters (CAG) in DNA’s four-letter code. This stutter leads to production of a misfolded protein that is toxic to the brain’s neurons, triggering a degenerative process that, over time, leads to mood swings, slurred speech, uncontrolled movements, and, eventually, death. In a new study involving a mouse model of Huntington’s disease, researchers were able to stop the production of the abnormal protein by using CRISPR tools to cut the stutter out of the mutant gene.

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.

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Fertility preservation for transgender individuals

The field of oncofertility emerged to preserve the fertility
of cancer patients whose treatment might render them as infertile or sterile.
Today, the field of fertility preservation has expanded to other patient
populations whose medical treatment may affect their fertility. One such
population is transgender individuals undergoing gender affirming treatments.
Although research on transgender individuals is limited overall and in
particular regarding issues surrounding reproduction, transgender individuals
are interested in biological reproduction. Because various gender affirming
treatments will permanently affect their fertility, such as hormonal treatment
and surgical removal of the gonads, it is important for transgender individuals
to be offered fertility preservation before they start these treatments.

There are, however, some factors that may make fertility
preservation difficult or less attractive of an option for transgender
individuals. Healthcare professionals offering fertility preservation should be
aware of these factors so they can help mitigate them. Here I will discuss two
of them.

First, undergoing fertility preservation treatment can be
stressful for both transgender and cisgender people, but there are some unique
challenges for transgender individuals. Individuals with gender dysphoria may
find it particularly difficult to undergo procedures involving anatomy that is
discordant with their identity. For example, transgender women who are asked to
retrieve sperm via masturbation may find this request exacerbates their gender
dysphoria and may not be possible to do. Transgender men who are asked to
undergo vaginal ultrasounds may find this psychologically traumatic. In
recognizing how fertility preservation treatment can be particularly difficult
for transgender individuals, healthcare professionals should be prepared to
find ways to alleviate these difficulties, such as by offering surgical methods
of sperm retrieval for transgender women and sedating transgender men during
vaginal ultrasounds.

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.

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National Right to Life Tackles End of Life Medicine

Several sessions at next week’s National Right to Life Conference address end-of-life medicine, including the general session: How to Prevent an Assisted Suicide Roe v. Wade.


Assisted Suicide Battles Rage in Nearly Every State: Is Your State Next?
Mary Hahn Beerworth, Scott Fischbach
The threat of doctor-prescribed suicide is advancing in the states. Moreover, the next Supreme Court nomination could lead to legalization of euthanasia nationwide. Assisting suicide is now legal in California, Oregon, Washington, Vermont, and, via the courts in Montana. With battles raging in states
across the country, the ongoing battle in Vermont will be discussed as will other battles nationwide. This workshop will give background and break open the myths surrounding doctor-prescribed suicide. The speakers will cover the current legal and legislative landscape, describe some different kinds of successful winning (and losing strategies), and talk about what you can do in your own state. In the wake of massive state legislative push and upcoming Supreme Court nominations, it is more important than ever that doctor-prescribed suicide be stopped in its tracks.


The Battle Against Simon’s Law: How Dirty Tricks Lost To Smart Negotiations
Kathy Ostrowski
When hospitals choose to fight against parental decision-making rights – the battle for life can take two paths, and only one leads to life. This workshop will provide a firsthand account of those who fought for Simon’s Law in Kansas. Simon’s Law is a very significant pro-life measure that combats selectively “rationed” care and medical discrimination against children with life-limiting diagnoses.  Kathy Ostrowski will share how the triumph of artful dialogue beat back bullying tactics and whisper campaigns.

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.

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Making the theoretical practical: Engaging undergraduate students in research methods by Hannah Mohammad

I am currently an undergraduate student in the Department of Global Health & Social Medicine at King’s College London. The Department’s UG program offers students the opportunity to study social aspects of health and medicine in a multi-disciplinary context with close collaboration between the social sciences, life sciences and biomedicine. In addition, a great emphasis is put on methods training to equip students to carry out their own empirical research projects.

Already in first year, the Research Practice and Design Studio course taught us theories and practices required for qualitative and quantitative research. However, in our undergraduate bubble, these late Tuesday afternoon sessions seemed somewhat distant from conducting actual research. In order to address this perceived disconnect, our course instructor, Dr Laurie Corna decided to adopt a problem-based learning approach that allowed us students to be positioned as emerging researchers whilst learning theoretically about a range of issues central to quantitative and qualitative research designs.

A new research methods course was designed around a series of case-based learning activities that culminated in students conducting their own mixed-methods research. Students’ assignments for the course involved working in teams of two on applying and executing various aspects of the research process in relation to the predefined topic “Physical activity in the city of London”.[1] That is, we learned how to articulate research questions, identify ethical problems, write a research proposal and develop related interview topic guides as well as survey questionnaires. Once we had conducted our research, we were tasked to present our findings in the form of a poster during a “Research Showcase” and create a final report on the research project.

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.

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Educating the church about how to think about bioethics

Janie Valentine’s post on Monday about a Christian health sharing ministry considering the surgical treatment of ectopic pregnancy to be the moral equivalent of abortion points out a major concern related to the church and bioethics. This is particularly a concern regarding the evangelical Protestant church and bioethics. With its hierarchical structure the Roman Catholic Church has a way of connecting the well considered thoughts about bioethical issues that are expressed by Roman Catholic ethicists with the ministries of the church. Protestant churches, and evangelical Protestant churches in particular, have a significant disconnect between those who think deeply about and write about bioethical issues and those who are doing ministry.

The issue of whether to cover the costs of surgical treatment of ectopic pregnancy illustrates the need for people within the church to learn how to think about bioethics and other ethical issues. It is not that we need to have some established evangelical set of ethical positions on issues, but rather an understanding by people in the church of how to properly analyze and think about an ethical issue. Over centuries of thought Christian scholars have recognized the principle of double effect as a good way of analyzing moral dilemmas in which doing something that is good, such as saving the life of a woman with an ectopic pregnancy results in the unwanted bad affect of the death of an embryo. It is clear that we should not focus solely on consequences and do things that are wrong even to save a person’s life, but it is reasonable at times to do good things that have unintended but foreseeable bad effects.

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.

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Guest Post: Crispr Craze and Crispr Cares

Written by Robert Ranisch, Institute for Ethics and History of Medicine, University of Tuebingen

@RobRanisch

Newly discovered tools for the targeted editing of the genome have been generating talk of a revolution in gene technology for the last five years. The CRISPR/Cas9-method draws most of the attention by enabling a more simple and precise, cheaper and quicker modification of genes in a hitherto unknown measure. Since these so-called molecular scissors can be set to work in just about all organisms, hardly a week goes by without headlines regarding the latest scientific research: Genome editing could keep vegetables looking fresh, eliminate malaria from disease-carrying mosquitoes, replace antibiotics or bring mammoths back to life.

Naturally, the greatest hopes are put into its potential for various medical applications. Despite the media hype, there are no ready-to-use CRISPR gene therapies. However, the first clinical studies are under way in China and have been approved in the USA. Future therapy methods might allow eradicating hereditary illnesses, conquering cancer, or even cure HIV/AIDS. Just this May, results from experiments on mice gave reason to hope for this. In a similar vein, germline intervention is being reconsidered as a realistic option now, although it had long been considered taboo because of how its (side)effects are passed down the generations.

The developmental history of genome editing reveals itself as a recalibration of ethical standards in research. Two years ago, the first-time use of these new tools on (non-viable) embryos in China led to a solid scandal; in retrospect, it is not clear anymore whether the outrage was triggered by ethical concerns or by the circumstance that this (perceived) taboo was broken by China of all countries.

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.

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When “neuro” met “ethics”

Two short words increasingly often appear in combination with names of professional fields and scientific disciplines: neuro and ethics. Here are some examples: Neuromusicology, neurolaw, neuropedagogy. Bioethics, nursing ethics, business ethics.

Neuro… typically signifies that neuroscience sheds light on the subject matter of the discipline with which it combines. It can illuminate what happens in the brain when we listen to music (neuromusicology). What happens in the brain when witnesses recall events or when judges evaluate the evidence (neurolaw). What happens in children’s brains when they study mathematics (neuropedagogy).

…ethics (sometimes, ethics of…) typically signifies that the discipline it combines with gives rise to its own ethical problems, requiring ethical reflection and unique ethical guidelines. Even war is said to require its own ethics of war!

In the 1970s, these two words, neuro and ethics, finally met and formed neuroethics. The result is an ambiguous meeting between two short but very expansive words. Which of the two words made the advance? Where is the emphasis? What sheds light on what?

At first, ethics got the emphasis. Neuroethics was, simply, the ethics of neuroscience, just as nursing ethics is the ethics of nursing. Soon, however, neuro demonstrated its expansive power. Today, neuroethics is not only the “ethics of neuroscience,” but also the “neuroscience of ethics”: neuroscience can illuminate what happens in the brain when we face ethical dilemmas. The emphasis thus changes back and forth between neuroethics and neuroethics.

The advances of these two words, and their final meeting in neuroethics, reflects, of course, the expansive power of neuroscience and ethics.

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.

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Samaritan Ministries and Ectopic Pregnancies

As I was reading Laura Turner’s Buzzfeed essay about Christian health sharing ministries this past week, I was startled to discover that Samaritan Ministries, the insurance alternative my husband uses, does not cover expenses related to ectopic pregnancies.

In Section VIII of the Samaritan Ministries Guidelines, “Needs Shared by Members,” Ectopic Pregnancies is listed as the ninth item under “Miscellaneous Items Not Shared.” The guidelines state:

“Expenses related to the termination of the life of an unborn child are not publishable. The removal of a living unborn child from the mother which results in the death of the child is a ‘termination of the life of the child’ unless the removal was one for the primary purpose of saving the life of the child, or improving the health of the child. This means that the removal from the mother of an unborn child due to an ectopic pregnancy (outside the normal location in the uterus) is not publishable unless the member states they believed the child was not alive before the procedure. Considerations of the health or life of the mother does not change that the removal of a living unborn child from the mother may be a termination of life.”[1]

Ectopic pregnancy occurs when a fertilized egg implants outside of the uterus, most commonly in one of the fallopian tubes.[2]  The condition is highly dangerous to the mother, who is at risk of internal rupturing and blood loss.[3]  While there are different classifications of ectopic pregnancies and a few different methods of treatment, Turner approximates the cost of surgery to save the life of the mother to be around $15,000.

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.