Tag: genetic markers

Bioethics News

Why Don’t More African Americans Become Organ Donors?

February 7, 2017

(BBC) – In 2016, African Americans accounted for 30% of the overall organ donation waiting list, and 33% of the kidney list, despite being only 13% of the US population. A black organ recipient doesn’t have to have a black donor. But they would be more likely to have a successful match – based on certain genetic markers and antibodies – if more black donors were available. The percentage of black Americans who donate organs has risen since 1988, but there is still an outsized need.

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

Good Enough Lives – Procreative Satisficence

By Dominic Wilkinson @Neonatalethics

 

Should parents undertake prenatal testing? Is there a moral reason to prevent disability in your future child through embryo selection?

In a special Moral Philosophy Seminar yesterday evening, Professor Tom Shakespeare, from the University of East Anglia, gave a nuanced and multi-faceted argument against the arguments advanced by Julian Savulescu and Jeff McMahan in favour of embryo selection. In particular he attacked Julian’s Principle of Procreative Beneficence (PB)

Procreative Beneficence (shortened version): when considering different possible children, based on relevant available information, couples should select the child who is expected to have the best life*

Tom rejected some arguments against PB. For example, he was keen to emphasise that he supported parents right to choose not to continue a pregnancy where the fetus would have significant disability. He does not feel that such decisions necessarily express the view that lives with disability are not worth living (the ‘expressivist’ objection against abortion or embryo selection). He also distanced himself from the view that disabilities are a ‘mere difference’, and simply a neutral characteristic – like hair or eye colour.

However, Shakespeare also gave a strong argument against there being a moral duty for parents to select embryos without a genetic marker for disability. He cited evidence that many disabled individuals (including some with severe cognitive impairment) live fulfilling, rich lives and are as happy as non-disabled individuals. He challenged the implicit genetic determinism in embryo selection – there are, he claimed, many other factors that contribute to how well a life goes, including the social setting, and upbringing and as well as the influence of chance events in the child’s future.

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 of Sudden Cardiac Death Exposes Limits of Genetic Testing

August 19, 2016

(NPR) – Scientists have discovered that a common cause of sudden heart death has been misunderstood because researchers didn’t appropriately account for racial differences in their studies. The findings, published online Wednesday in the New England Journal of Medicine, have implications far beyond this particular inherited disease, called hypertrophic cardiomyopathy, or HCM. Researchers say the results also sound a cautionary note for many other illnesses that have been identified through genetic markers.

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

What is a Family? Refugee DNA and the Possible Truths of Kinship by Carole McGranahan

Tashi thought they were his kids. They were his kids. He was the only father they had ever known. He had been their father since the day each of his four children was born. After being recognized as a Convention Refugee in Canada, he applied for permanent residence and listed his wife and children as his “overseas dependents” on his application. Finally he would be reunited with his family who had waited in a Tibetan refugee camp in South Asia while he made the uncertain journey to Canada via a well-worn route through the USA. He had dutifully written down their names, sexes, ages, and dates of birth on his application. He had told the truth. But then the Canadian government asked for a DNA test as proof that the children were his. His claiming them was not enough because, as the government asserts, refugees lie. And then a different truth was revealed. He was not the genetic father of two of his children, although his wife was their genetic mother. Canadian government officials decided that Tashi had been untruthful in claiming these children—his children—on his permanent resident application. His request to bring his family to Canada was denied.

What sort of truths do DNA tests provide? What are the social and family truths that precede and exceed DNA? What is the responsibility of the anthropologist to confirm or challenge these truths?

Tashi’s struggle to reunite his family came to me as a legal case in need of anthropological expertise. It was a legal case that needed to also be an ethnographic one.

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

Gene Editing: A CBC Interview of Margaret Somerville and Julian Savulescu

The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu

Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.

Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.

JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?

JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur.

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

Is trauma in our genes? Ethical implications of epigenetic findings

by Neil Levy

Neil Levy is professor of philosophy at Macquarie University, Sydney and deputy director of the Oxford Centre for Neuroethics. He is the author of 7 books, including Neuroethics (2007) and Consciousness and Moral Responsibility (2014), and edits the journal Neuroethics. He is also a member of the AJOB Neuroscience board.

A recent study by Rachel Yehuda et al. in Biological Psychiatry provided further evidence for the genetic transmission of acquired characteristics, by showing that Holocaust survivors passed certain acquired genetic markers to their children. The idea that acquired characteristics can be genetically transmitted is (roughly) equivalent to the doctrine of Lamarckism, and was long considered a heresy in biology. [Editor’s note: see also Ryan Purcell’s 2014 post for this blog on the relationship between Lamarckism and epigenetics.] According to the Darwinian orthodoxy, traits change because randomly occurring mutations confer a relative fitness advantage on some organisms, not because they change their behaviour, and that change then comes to be encoded in the genes. But the orthodoxy has long been shattered. Scientists now recognize that the story is a lot more complex than that.

This new study is of central interest to neuroethics for many reasons. One is that the trait in question is psychological, or at least very plausibly underlies a disposition to certain psychological responses, given the right circumstances. Children of Holocaust survivors are themselves at higher risk for stress disorders: a propensity to stress disorders is inherited. How does the inheritance work? One possibility is that their parents behave differently, due to the trauma they experienced, and this difference in how they treat their children causes the difference in susceptibility.

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

Editing Genes

The idea of “designer babies” is not an uncommon discussion topic in bioethics communities or pop-culture. From its depiction in “classic” bioethics ethics movies like GATTACA, to current medical practices, like allowing for selective implantation of IVF created embryos, the idea of choosing our children has moved from science fiction to being realized as an actual possibility.

As I was reading the news yesterday, I came across an article that highlighted a new technic being tested in China that would take this to a whole new level. The study being highlighted is one where Chinese scientists are using a technic to “edit” human genes through a process known as “Crispr” to modify human DNA. There are so many ethical concerns regarding this research experiment and it’s potential application, that to address all of them would far exceed the limits of a blog post. However, I do want to raise some of my broader concerns for consideration with the advent of this experiment.

First, I am concerned about the very nature of the experiment. Eighty-five (85) human embryos were tested on with no intention of allowing them to fully develop. Experimenting on human lives at the earliest stages with the intent to destroy them, or to prevent them from developing, poses a major ethical problem. It regards human life as disposable by allowing for its destruction at the earliest stages of development. Additionally, the article also refers to the embryos tested as being deemed “defective” (please note defective was not defined). As I discussed in my post on April 13, 2015, discrimination due to a perceived “defect” is highly problematic.

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

“Right to Try” Laws, Compassionate Use, and Adverse Events: A Second Cautionary Tale

by Alison, Bateman-House, Ph.D., MPH

In 2014, Colorado became the first state to debate and then pass a so-called “Right to Try” law. In early 2015, there are now five states that have such laws: Colorado, Michigan, Louisiana, Arizona, and Missouri. The Utah and Virginia state legislatures have passed their own right to try laws, both of which await signature by their respective governors, and over twenty other states are actively debating right to try legislation.

These right to try state laws are based on a model bill that was circulated by the Goldwater Institute, a libertarian think tank based in Arizona. According to the Goldwater Institute, the U.S. Food and Drug Agency’s regulations for new drugs take a toll on terminally ill Americans, a number of whom die before they can get access to potentially lifesaving experimental treatments. Thus, the model law cuts the FDA out of decisions about whether patients may be granted access to experimental treatments. Under right to try laws, a patient may ask the company developing a drug or device to make that experimental medical product available to her. The company does not have to provide it, and if the company does decide to provide the patient with the experimental drug or device, they may charge her for it (and her insurance company has no obligation to pay for it). But, if the patient and the company come to a mutually agreeable decision, there is no need to seek FDA approval of their plan. This is a controversial change in that such decisions were previously understood to be regulated by the FDA under its federal legal mandate.

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

Genetic Studies Yield New Insights into Obesity

Silhouettes of peopleToday, we hear a great deal about which foods to eat and which to avoid to maintain a healthy body. Though we know that one of the strongest contributors to body weight is heredity, there has been less specific information available about the genetics underlying obesity. But research in this area is progressing at a phenomenal pace, and new genomic discoveries are helping to bring into better focus how our bodies store fat and how the complex interplay of genetics, diet, behavior, and other factors determine whether we can readily maintain a healthy body weight, or whether it takes a lot of work to do so.

Two papers in Nature provide lots of fresh clues into the genetic factors involved in predisposing to obesity. Researchers in the international Genetic Investigation of ANthropometric Traits (GIANT) Consortium, more than 500 strong and  including some of the members of my own NIH research lab (including me), examined the genomes of more than half a million people to look for genes and regions of chromosomes that play a role in body fat distribution and obesity. They turned up over 140 genetic locations that, like low-intensity voices in a choir of many, contribute to these traits. Further analyses of the specific genes located in these regions suggest the possibility that the programming behind how fat cells form may influence their distribution, a discovery that could lead to exploitable findings down the road.

In the first study, the researchers focused on genes that influence the waist-to-hip ratio, a standard measure of fat distribution in the body [1].

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.