Tag: prenatal diagnosis

Bioethics Blogs

Fetal tissue and commerce

You may have seen in the general press that Indiana University is asking a federal judge to declare unconstitutional that state’s law banning research on the remains of aborted fetuses.  I noticed an article in the Wall Street Journal (subscription required).  An open-access account can be found here.

I oppose abortion, but I can imagine for the sake of argument that, if one allows for abortion, that it might be claimed that the tissue of an aborted unborn human could ethically be donated for research.  It seems to me that such an argument would construe this donation to be similar to donation of organs for transplantation.  In this case, the mother would be speaking for her (newly-deceased) unborn to make the decision, since the aborted one would not have decision-making capacity.

For such an action to be remotely ethical, donation of tissue could not in any way influence the decision to have an abortion–as, indeed, federal restrictions on fetal tissue research currently require.  There should be no profit to the donor or the abortion provider in the process.  In light of the Planned Parenthood brouhaha over this subject, I might suggest that the researchers seeking the tissue for research be required to bear any costs for the preparation of the tissue.  And something like the dead donor rule for organ transplantation would have to apply.  But that’s probably a trivial point in this case.  Never mind that the dead donor rule itself is under attack these days.

I imagine it’s clear that I don’t find this argument very persuasive. 

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

Will CRISPR fears fade with familiarity?

With all these ‘test tube’ babies grown up, how have our reactions to the technology evolved? AP Photo/Alastair Grant

The first “test-tube baby” made headlines around the world in 1978, setting off intense debate on the ethics of researching human embryos and reproductive technologies. Every breakthrough since then has raised the same questions about “designer babies” and “playing God” – but public response has grown more subdued rather than more engaged as assisted reproductive technologies have become increasingly sophisticated and powerful.

As the science has advanced, doctors are able to perform more complex procedures with better-than-ever success rates. This progress has made in vitro fertilization and associated assisted reproductive technologies relatively commonplace. Over one million babies have been born in the U.S. using IVF since 1985.

And Americans’ acceptance of these technologies has evolved alongside their increased usage, as we’ve gotten used to the idea of physicians manipulating embryos.

But the ethical challenges posed by these procedures remain – and in fact are increasing along with our capabilities. While still a long way from clinical use, the recent news that scientists in Oregon had successfully edited genes in a human embryo brings us one step closer to changing the DNA that we pass along to our descendants. As the state of the science continues to advance, ethical issues need to be addressed before the next big breakthrough.

Birth of the test-tube baby era

Louise Brown was born in the U.K. on July 25, 1978. Known as the first “test-tube baby,” she was a product of IVF, a process where an egg is fertilized by sperm outside of the body before being implanted into the womb.

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

Ethical issues in foetal genome sequencing. New level of complexity to medical, family and social decisions resulting from this prenatal diagnosis

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.

Bioethics News

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.

Bioethics Blogs

Spotlight on Non-Invasive Prenatal Testing

Chris Kaposy suggests that Canada should learn from the United States’ failure to regulate the industry for Non-Invasive Prenatal Testing.

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Non-Invasive Prenatal Testing to detect genetic conditions in fetuses is a growing industry. Originally developed to screen traces of cell-free fetal DNA in the blood of pregnant women for the purpose of identifying fetuses with Down syndrome, Non-Invasive Prenatal Testing kits are now available for trisomies 13, and 18, sex chromosome aneuploidies, and a myriad of sub-chromosomal deletions that cause conditions such as Prader-Willi/Angelman syndrome, Wolf-Hirschhorn syndrome, and Jacobsen syndrome.

I recently co-authored an article in the journal Prenatal Diagnosis that details some of the impact of this expansion of prenatal testing on American groups that advocate for persons with the genetic conditions detected by this new form of prenatal testing. Advocacy group members, some of whom participated in writing the article, suggest that the development and the expansion of Non-Invasive Prenatal Testing have occurred without sufficient regulatory oversight in the United States, and without adequate genetic counselling resources.

The early industry-funded studies into Non-Invasive Prenatal Testing for Down syndrome related that these tests demonstrated a high degree of sensitivity (an ability to successfully identify fetuses with Down syndrome) and specificity (an ability to correctly identify fetuses without Down syndrome). Subsequent studies by independent researchers and clinics, however, were less definitive than the initial industry-based studies. These studies noted several problems including false positives, questions about positive predictive value, and other test limitations. Nonetheless, tests for rarer conditions such as genetic microdeletions were introduced to the American market with less supporting data than originally provided for Down syndrome testing.

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

Special “Editor’s Choice” Issue of the Journal of Medical Ethics Now Online

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I am excited to announce the publication of a special “Editor’s Choice” issue, now online at the journal website. In a rare turn for the journal, the entire issue made up of “Editor’s Choice” papers, with invited (peer-reviewed) papers from both up-and-coming and established scholars.

Editor-in-Chief Professor Julian Savulescu explains the significance of the issue: “Our self-imposed brief was to concentrate on excellent but less well-known scholars from a variety of perspectives, especially those who are young and up and coming, alongside some more established contributors.”

Although no particular topic assignment was given, Professor Savulescu remarks that “it is interesting that [the] contributions aggregate naturally around four perennial clusters: the concept of the good life, end of life, public health and new technologies (enhancement/selection).”

Here are some highlights from each contribution to the issue:

In “Prenatal screening and prenatal diagnosis: contemporary practices in light of the past,” Ana S. Iltis discusses genetic selection in the context of modern eugenics. As Savulescu notes: “She gives five reasons to believe this is not significantly different from old style, discredited eugenics of the late nineteenth and early twentieth century. Indeed, she argues convincingly that social goals, ‘public health’ and cost-effectiveness remain important drivers of genetic screening and testing programmes.”

Then, in “The ethics of sexual reorientation: what should clinicians and researchers do?” Sean Aas and Candice Delmas take on an argument that Savulescu, along with Dr. Anders Sandberg of the University of Oxford as well as myself (Brian Earp), have advanced with respect to the ethics of sexual orientation “conversion” therapy.

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

Israeli Parents, Indian Surrogates, a Nepali Earthquake, and “Cheap White Eggs”

The typical media story about transnational commercial surrogacy presents the process as a creative solution for people who could not otherwise legally or financially pursue surrogacy to become parents.  The experience of the women whose bodies are used to nourish and develop these babies, and who give birth to them, remains a back-story. But in a recent Radiolab episode, a chance encounter and a momentous earthquake coincide to reveal rarely examined layers of complexity in this oft-told fairy tale.

Two Israeli men, Tal and Amir—legally excluded only by virtue of their sexual orientation from hiring an Israeli woman to bear children for them in their own country—discover that they can do so through an agency that hires Indian and Nepali women. Of course they have to obtain eggs from women with more desirable physical attributes. They soon learn that “cheap white eggs” can be obtained from the Ukraine.

All of this is managed successfully. That is to say, they now have three children, each of whom has the genes of one of them as well as the genes of an unknown, tall, young, Ukrainian woman. And they have three more embryos in a freezer in Nepal.  So why, looking back on the experience, did they say: “We feel like suckers”?

The men claim, as do many commissioning parents, that they did not want to be part of an exploitative process. Yet they seem to have given little thought to the provider of those “cheap white eggs”—only that their child’s genetic mother’s height and physical appearance fit their specifications.

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 last psychopath: using the brain to root out disorder

Eleanor Worthington Cox plays Jessie in Tomcat / Richard Davenport  

It is compulsory for expectant mothers to have their unborn child genetically screened for disabilities or traits considered to be a burden to society. If a genetic “defect” is found, termination is mandatory. Those who refuse to comply face court orders.

This scenario is still science fiction, but for how long?

The subject is tackled in James Rushbrooke’s excellent play, Tomcat, which is currently running at Southwark Playhouse in London.

Twelve-year-old Jessie (Eleanor Worthington Cox) is the protagonist of the play. She is the last human carrying the genetic marker for psychopathy and has been the subject of a research project for ten years. She lives in captivity and is observed by a team of doctors and scientists who want to understand the biological basis of psychopathy. The researchers believe that it is not possible for the environment to save her from her genetic destiny.

Rushbrooke powerfully portrays a near future in which society has traded freedom and respect for humanity for a “healthy” populace, free of disability and disorders. The play raises the question: if we had the technology to get rid of the traits that cause a burden to society, should we use it?

But what counts as an illness or a disability? And is there a value in conserving disability?

We already have pre-implantation genetic diagnosis that, in the UK, can be used to screen for thalassemia, cystic fibrosis, and other genetic disorders. It can also be used to screen for traits traditionally considered a disability, such as deafness.

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, September 2015 (Part 1) by Anna Zogas

Here is the first round of “In the Journals” for September. Happy autumn reading!

American Anthropologist

Commitments of Debt: Temporality and the Meanings of Aid Work in a Japanese NGO in Myanmar
Chika Watanabe

The rise of debt as a mechanism of development troubles many scholars and aid practitioners. Contrary to these concerns, however, ethnographic research at a Japanese NGO in Myanmar showed that Japanese and Burmese aid workers found value in moral and monetary debt relations. In this article, I argue that these aid workers viewed indebtedness as a precondition for the making of voluntary actors, willing and committed to aid work. What they problematized was not indebtedness but, rather, competing understandings of the appropriate temporality of a debt’s repayment. The fault lines did not appear along cultural or moral-monetary boundaries; they existed in the ways that people conceptualized voluntary actors as emerging from either long-term forms of indebted gratitude or sequences of short-term contractual agreements. While the entrapment of the poor in cycles of debt remains an increasing concern in the world, I here ask how we might understand local aid workers’ professional commitments when they do not question indebtedness as a moral framework.

Rich Sentiments and the Cultural Politics of Emotion in Postreform Ho Chi Minh City, Vietnam
Allen L. Tran

Linking socioeconomic and personal transformations, recent scholarship on neoliberalism in East and Southeast Asia has examined the role of various emotional experiences in reconfiguring selfhood toward values of personal responsibility and self-care. However, studies rarely focus on how such experiences come to be understood as specifically emotional themselves.

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

Bioethics on US campaign trail

More bioethics in the US presidential campaign. Democratic front-runner Hillary Clinton has compared Republican candidates to terrorists for promising to ban all abortions with no exceptions for rape, incest or the life of the mother.

“Now extreme views on women, we expect that from some of the terrorist groups, we expect that from people who don’t want to live in the modern world, but it’s a little hard to take coming from Republicans who want to be the president of the United States.”

She also gave strong support to beleaguered Planned Parenthood, which is fighting allegations that it is profiting from the sale of foetal tissue.

But the most interesting controversy is simmering in Ohio, where one of Ms Clinton’s would-be rivals, Republican Governor John Kasich, is mulling over whether or not to sign a bill banning the abortion of Down syndrome children.

Critics say that the bill is confused. It could mean that many more Down syndrome children will be born. At the moment, 60 to 90% of women abort them after a prenatal diagnosis. But the bill makes no provision for extra funding to care for the disabled children. As The Economist noted: “If the law goes through, as seems likely, women will be required by the state to give birth to their disabled child, but will not be able to count on much help from the state to raise it.”

Champions of Down syndrom children focus on human rights, not the financial burden. “We all want to be born perfect, but none of us are, and everyone has a right to live, perfect or not,” Mike Gonidakis, the president of Ohio Right to Life told the New York Times.

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.