Tag: parents

Bioethics News

When Baby Is Due, Genetic Counselors Seen Downplaying False Alarms

March 7, 2016

(Boston Globe) – Parents are starting to question the independence of the fast-growing field of genetic counseling as more and more counselors are paid by the companies that make the tests. About 14 percent of the nation’s 4,000 genetic counselors worked directly for testing labs in 2014, up from 9 percent just two years earlier, according to their professional society. The balance tend to work for hospitals or doctors’ practices.

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 @ TIU 2016-03-06 17:06:07

To a young man seeking to find a bride in India, one might be tempted to say, “Good luck. You’re going to need it!” According to the most recent government census (January 2016), there are only 944 females for every 1,000 males in the burgeoning population (approximately 626 million females and 668 million males). A main factor contributing to the gender imbalance in India is sex-selective abortions of female fetuses.

The sex ratio at birth – the number of girls born per 1,000 boys – has been declining for years, falling from 962 in 1981, to 945 in 1991, to 927 in 2001, to 914 in 2011. The India government is keenly aware of the problems associated with the skewed sex ratio at birth: “The decreasing sex ratio in this age group has a cascading effect on population over a period of time leading to diminishing sex ratio in the country. One thing is clear – the imbalance that has set in at this early age group is difficult to be removed and would remain to haunt the population for a long time to come.”

The Pre-Conception and Pre-Natal Diagnostic Techniques Act (PCPNDT ACT), passed in 1994 and amended in 2002, sought to stem the tide of sex-selective abortions, a purpose explicitly stated in the preamble: “An Act to provide for the prohibition of sex selection, before or after conception, and for regulation of prenatal diagnostic techniques for the purposes of detecting genetic abnormalities or metabolic disorders or chromosomal abnormalities or certain congenital malformations or sex-linked disorder and for the prevention of their misuse for sex determination leading to female foeticide; and, for matters connected therewith or incidental thereto.” Though parents and physicians are subject to a five-year jail term for requesting or conducting a prenatal sex test, the practice is thought to remain widespread.

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

Surrogate Mom Melissa Cook’s Shocking Battle for Newborn Triplets After the Biological Father Told Her to Abort

March 3, 2016

(People) – She quickly realized she’d been copied on communication between the biological father – a 50-year-old single, deaf postal worker from Georgia who lives with his elderly parents – and his attorney. What she read made her “sick to her stomach.” Says Cook: “He wrote, ‘I can’t afford Melissa’s doctor visits . . . I don’t think I can afford the babies, so I just want to abort all three babies.”

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

Alcohol, pregnancy, experts, and evidence

In the United States, the Centers for Disease Control recently released a new advisory regarding the use of alcohol during or around pregnancy. According to the CDC, any drinking by women ‘who are pregnant or might be pregnant’ constitutes ‘drinking too much.’ The primary reason for the label is the risk of a fetus developing Fetal Alcohol Syndrome, although Sudden Infant Death Syndrome (SIDS) and miscarriage were listed as well. The range of the recommendation is rather wide – the CDC targeted any woman who might be or become pregnant (so, any sexually active woman capable of becoming pregnant). The recommendation has been widely criticized.
 
A number of commentators noted the shaky evidential basis for the advisory. Regarding Fetal Alcohol Syndrome, for example, there is a lot we do not know regarding the amounts of alcohol that are dangerous, and it has been suggested that genetics might play a role in propensity to develop the Syndrome. Regarding SIDS, some evidence suggests the link between alcohol and SIDS is moderated by parents co-sleeping with infants after abusing alcohol – but the advice offered by the CDC did not flag this indirect (potential causal) link.
 
Writing in the LA Times, the philosopher Rebecca Kukla also emphasized the contributions such messages make to creating a culture of shame surrounding women and pregnancy (here). Writing for Time, Darlena Cunha argued that the CDC advice is overly paternalistic, and discriminates against women (here).
 
I do not wish to justify the CDC. I rolled my eyes like many others when I first heard of the recommendations.

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 Enclosed Case by Elizabeth Lewis

The case that follows illustrates an ethnographic flashpoint in my work on disability. Here, I offer an account of a single morning during my first research trip in Central America. The day marked my only visit to a particularly well-known institution (or shelter) for children and adults with disabilities. The following summer, I would learn that the scenes depicted below were not necessarily representative of other shelters in the country.

Still, several years later, this particular case – this single morning – continues to shape my thinking on the making and unmaking of disability personhood in everyday life. I use it not to highlight the plight of an individual or probe the lived experience of disability in certain economic and sociopolitical contexts. Rather, I approach it as the first of several encounters that prompted me to examine my preconceptions of disability outliers – cases that originally struck me as so extreme they couldn’t possibly happen closer to home, back in the U.S. People kept in closets? Surely not. Children abandoned to live in nursing homes? Impossible. A suspicion that disability was contagious? Come on. Having spent my entire life immersed in the disability community, whether personally, as an ally, or through my research, I naively assumed that I knew better.

Yet I heard such stories again and again as I moved forward with my work on family experiences with rare and undiagnosed disabilities, those confusing puzzles of sensory, physical, and intellectual difference that do not correspond to a clear label – the bodies that fall outside of diagnostic common sense.

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

Sweden could ban surrogacy

Eva Wendel Rosberg with Justice Minister Morgan Johansson. Photo: Erik Nylander / TT    

Both altruistic and commercial surrogacy should be officially discouraged in Sweden, according to a report to the government. Justice Eva Wendel Rosberg, the author, said that “The most important reason we do not want to allow surrogacy in Sweden is the risk of women facing pressure to become surrogate mothers. It is a big commitment and it involves the risks of becoming pregnant and giving birth.” She also says that the government should prevent Swedes from going to IVF clinics abroad to recruit surrogate mothers.

There are still many unknowns about surrogacy, she observed. Women can be subjected to pressure to enter into a surrogacy arrangement. And little is known about how it affects the children themselves. Furthermore, under Swedish law, the birth mother is the legal mother, which could lead to complications if a surrogate changes her mind about the pregnancy.

Justice Wendel Rosberg’s recommendations conflict with another report from the National Council on Medical Ethics (SMER), which proposed that surrogacy would be acceptable provided that the surrogate mother and the commissioning parents had a close relationship.  Justice Wendel Rosberg said that SMER had examined only the medical ethics of the issue and had not studied the numerous complex legal issues involved in a surrogacy contract.

Left-wing Swedish journalist and anti-surrogacy activist contributed a blistering commentary in The Guardian in support of a ban.

Surrogacy may have been surrounded by an aura of Elton John-ish happiness, cute newborns and notions of the modern family, but behind that is an industry that buys and sells human life.

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

Should Doctors Perform “Minor” Forms of Female Genital Mutilation (FGM) as a Compromise to Respect Culture?

by Brian D. Earp / (@briandavidearp), with a separate guest post by Robert Darby

A small surgical “nick” to a girl’s clitoris or other purportedly minimalist procedures on the vulvae of young women and girls should be legally permitted, argue two gynecologists this week in the Journal of Medical Ethics. Their proposal is offered as a “compromise” solution to the vexed issue of so-called female genital cutting or mutilation (FGM).

According to the authors, Kavita Shah Arora and Allan J. Jacobs, legally restricting even “minor” forms of non-therapeutic, non-consensual female genital cutting is “culturally insensitive and supremacist and discriminatory towards women.” Discriminatory, apparently, because non-therapeutic, non-consensual male genital cutting (a.k.a. male circumcision) is widely tolerated in Western societies; why shouldn’t women and girls be allowed to participate in analogous cultural rites that are important to members of their own groups?

I take issue with the authors’ proposal. In a commentary published in response to their piece (currently available “online first” along with two other commentaries: see here and here), I argue that to allow supposedly minimalist female genital cutting procedures before an age of consent in Western societies would result in numerous legal, ethical, political, regulatory, medical, and sexual problems, creating a fiasco. So problematic, in my view, is the proposal by Arora and Jacobs, that I have prepared a separate online supplementary appendix to expand upon my published commentary, in which I address each of their specific claims and arguments one by one: see here.

Rather than continuing to tolerate childhood male circumcision, and using this as a benchmark for allowing supposedly “minor” forms of FGM, I argue that we should instead move in the opposite direction.

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

Ontario’s New Sex Ed Curriculum: a Glimmer of Hope

Adam W.J. Davies and Wayne Martino comment on Ontario’s Health & Physical Education Curriculum

__________________________________________

It is often said that your childhood experiences frame who you become as an adult. As educators and researchers, we could not agree more with this statement. In our view, elementary, middle, and high school experiences are formative in shaping adult identities as young people learn about their bodies, health, and well-being.

Often gender and sexual minority youth struggle to find themselves represented within the heteronormative and cisgendered school walls. Thankfully, this is changing as educators in Ontario are being provided with curricular and legislative frameworks that endorse an educational program committed to providing information about bodies, sexual health, safe sex practices, and sexual and gender diversity. But much controversy has surrounded the new Ontario sex education curriculum, which has been described as radical in its approach to addressing gender and sexual diversity.

The recent release of the updated Health & Physical Education curriculum in Ontario, and its explicit inclusion of topics related to gender identity, gender expression, diverse sexualities, masturbation, and preventing sexually transmitted infections needs to be understood as anything but radical. Rather, it represents a necessary commitment to providing students with information about sexual health, safety, gender diversity, and well-being. The new sex education curriculum offers a glimmer of hope, if only for a second, that some queer, gender independent, and trans youth might experience a different childhood than previous generations. Indeed, the new curriculum delivers a baseline to begin to critique notions of heteronormativity and cisgender privilege in the educational system.

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

Interview: Carrie D. Wolinetz of the NIH on gene editing

Interview: Carrie D. Wolinetz of the NIH on gene editing

New gene editing technologies like the CRISPR-Cas9 technique hold great promise for medicine and the biological sciences. Some researchers say we may soon be able to eradicate infectious diseases like malaria, and edit HIV out of the genome of AIDS sufferers. Others believe we can use gene editing techniques to make animal organs suitable for human transplants. 

Yet there are many ethical questions attentant to research in the area, and ethicists are struggling to catch up with scientists eagerly refining the new gene editing techiques. Recently I spoke with Dr. Carrie D. Wolinetz, assistant director for Science Policy at the National Institutes of Health, about various concerns raised by bioethicists about gene editing.

Dr. Wolinetz worked on biomedical research policy issues as the Deputy Director for Federal Affairs at the Association of American Universities (AAU) and the Director of Scientific Affairs and Public Relations at the Federation of American Societies for Experimental Biology (FASEB). She also served as the President of United for Medical Research, a leading NIH advocacy coalition. Outside of NIH, Dr. Wolinetz teaches as an Adjunct Assistant Professor at Georgetown University in the School of Foreign Service’s program on Science, Technology & International Affairs.

******

Xavier Symons: The NIH is funding research into gene editing, but has stopped short of assisting projects involving human embryos. Why?

Carrie D. Wolinetz: On April 29, 2015, the NIH Director, Dr. Collins, issued a statement that “NIH will not fund any use of gene-editing technologies in human embryos.”  In this statement, the Director noted the great potential that genomic editing technologies have for advancing the understanding of gene function and for non-heritable, therapeutic applications, including several human gene therapy trials studying the use of gene editing in somatic cells for HIV-1, β thalassemia, and hemophilia. 

However, the use of these technologies to modify the human germline raises complex issues, and while recent technological advances such as CRISPR-Cas9 have increased the technical feasibility, safety and ethical concerns have yet to be allayed.

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, February 2016 Part I by Melanie Boeckmann

This month’s reading list, part I

American Ethnologist

The 2015 Refugee Crisis in Europe: Forum

Representing the “European refugee crisis” in Germany and beyond: Deservingness and difference, life and death

Seth M. Holmes, Heide Castaneda

The European refugee crisis has gained worldwide attention with daily media coverage both in and outside Germany. Representations of refugees in media and political discourse in relation to Germany participate in a Gramscian “war of position” over symbols, policies, and, ultimately, social and material resources, with potentially fatal consequences. These representations shift blame from historical, political-economic structures to the displaced people themselves. They demarcate the “deserving” refugee from the “undeserving” migrant and play into fear of cultural, religious, and ethnic difference in the midst of increasing anxiety and precarity for many in Europe. Comparative perspectives suggest that anthropology can play an important role in analyzing these phenomena, highlighting sites of contestation, imagining alternatives, and working toward them.

Immobilizing mobility: Border ethnography, illiberal democracy, and the politics of the “refugee crisis” in Hungary

Annastiina Kallius, Daniel Monterescu, Prem Kumar Rajaram

In the summer of 2015, more than 350,000 migrants moved through Hungarian territory. Almost immediately there emerged in response a dialectic between, on the one hand, depoliticizing narratives of crisis that sought to immobilize the migrants and, on the other, concrete political mobilization that sought to facilitate their mobility. While state institutions and humanitarian volunteer groups framed mobility in terms that emphasized a vertical form of politics, a horizontal counterpolitics arose by the summer’s end, one that challenged hegemonic territorial politics. The state’s efforts to immobilize resulted only in more radical forms of mobility.

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.