Tag: genetics

Bioethics Blogs

In Memoriam: John A. Robertson

by David Magnus, Ph.D.

Sadly, the field of bioethics lost one of its best this week. John Robertson, a law professor at the University of Texas and a major figure in law and bioethics, passed away on July 5th. John was an important scholar whose work spanned major contributions to scholarship on end of life, organ transplantation, and genetics, but he is best known for his work on reproductive technology. John’s articulation and defense of the importance of procreative liberty, though both his articles and his important book, Children of Choice, stands as an exemplar for scholarship in bioethics. I have used his work in my classes for over 20 years, because no one has better articulated the perspective he brought to bear on issues in reproductive technology.

In addition to his scholarly contributions, what I will miss most about John is that he was a tireless and enthusiastic mentor and advocate for younger scholars. Without his support, I doubt that my career would have turned out the way it has. First, if you are reading this blog, you are aware of the success of the American Journal of Bioethics. The journal owes a great deal of its success (and perhaps its continued existence) to John. When the journal was first launched, most leaders in the field expressed a great deal of skepticism about the need or value of another journal. John not only supported us and encouraged us, he made a major contribution to ensure our success. As the Chair of the ethics committee of the American Society for Reproductive Medicine, John was instrumental in promoting a position to accept uses of new technologies for sex selection (at least in the context of family balancing).

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

Personalized Medicine: Our Future or Big Data Voodoo?

Kumar Ethirajan, MD

NOTE: Kumar Ethirajan, MD, an oncologist specializing in cancer genetics in the Kansas City area since 1993 and member of the Center for Practical Bioethics’ board of directors, will present this topic as part of the Center’s BIOETHICS MATTERS lecture series on Wednesday, July 19, 7:00 pm, at the Kansas City Public Library Plaza Branch, 4801 Main Street, Kansas City, MO. Bring your perspectives, questions and personal stories. Admission is free. All are welcome. 

Personalized medicine has the potential to revolutionize medicine. Actually, that’s not true. Personalized medicine IS REVOLUTIONIZING medicine. 

Personalized medicine IS our future! Yet, based on a 2013 survey by GfK, a global consumer research firm, just 27% of people have heard of the term personalized medicine and, of those, only 4% understand what the term means.

You may have heard personalized medicine referred to as genomic medicine, precision medicine or individualized medicine. Whatever you call it, it’s medicine that uses information about your genes to prevent, diagnose and treat disease. In cancer, it’s about using information about a tumor to discover certain biomarkers or genes and, hopefully, having a drug to treat it. So far, researchers have discovered more than 1800 disease genes, created more than 2,000 genetic tests for human conditions, and have 350 drugs currently in clinical trials.

So, this is great, right? Yes. But consider that some 30% of the world’s stored data is generated by the healthcare industry – and that a single patient on average generates 80 megabytes per year! With healthcare data exploding like this, shouldn’t we be thinking about the questions it raises?

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

In the Journals – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

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

Global Bioethics Initiative (GBI) launches its third edition Summer School Program

Global Bioethics Initiative (GBI) launches its third edition Summer School Program

New York, New York June 19, 2017, GBI starts its summer school program sponsored by Pace University, College of Health Professions and New York Medical College. Lead by experts in the field of Bioethics, students and professionals will witness Bioethics in various forms such as film screenings, field trips, and lectures/seminars, ending with a completion ceremony. Topics addressed in the program are: embryonic stem cell research, cloning, gene therapy, end-of-life care, genetics, reproductive technologies, human subject research, organ transplantation and access to health care.

“I am absolutely confident you leave this program enriched,”said Dr. Bruce Gelb, President of GBI. “You will find that what you learn over the coming days, will impact how you interact and engage with the world in many aspects of life.”

“There is a lack of opportunities for undergraduate, graduate students and professionals to learn about practical bioethics and GBI summer school helps to fill this void,” said​ Ana Lita, Co-Founder and Executive Director of GBI.

GBI is a not-for-profit international educational organization founded in 2011, by Dr. Ana Lita. GBI keeps the international community, policy decision-makers, the media, and the public versed in bioethical concepts. GBI provides this level of knowledge through an annual summer school program, human rights advocacy, and public policy reviews. GBI is associated with the United Nations Department of Information (UNDPI) with special consultative status with the United Nations Economic and Social Council (ECOSOC).

Attendees are encouraged to join Dr. Harriet R. Feldman, Dr. Charles Debrovner, and Dr. Ana Lita for the program’s introductory cocktail reception on June 20th, from 6-9PM at Pace University’s Aniello Bianco Room, 1 Pace Plaza, New York, New York,  featuring the singer, Sarah Hayes and​ her Trio​.

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

Ethical Challenges in the Development and Review of Genetics Research

From sequencing the human genome to discovering the underlying causes of many diseases, genetic research has the ability to profoundly influence the health of individuals and populations. However, despite genomics’ exceptional capacity to contribute to our understanding of disease, the nature of genetic research introduces many ethical considerations that may not arise in other types of biomedical research.

The post Ethical Challenges in the Development and Review of Genetics Research appeared first on Ampersand.

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

Baby Genome Sequencing for Sale in China

June 15, 2017

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A Boston-based DNA sequencing company is offering to decode the complete genomes of newborns in China, leading some to ask how much parents should know about their children’s genes at birth.

Veritas Genetics says the test, ordered by a doctor, will report back on 950 serious early- and later-life disease risks, 200 genes connected to drug reactions, and more than 100 physical traits a child is likely to have.

Called myBabyGenome, the service costs $1,500 and could help identify serious hidden problems in newborns, the company says.

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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

Helping or hacking? Engineers and ethicists must work together on brain-computer interface technology

A subject plays a computer game as part of a neural security experiment at the University of Washington. Patrick Bennett, Author provided

In the 1995 film “Batman Forever,” the Riddler used 3-D television to secretly access viewers’ most personal thoughts in his hunt for Batman’s true identity. By 2011, the metrics company Nielsen had acquired Neurofocus and had created a “consumer neuroscience” division that uses integrated conscious and unconscious data to track customer decision-making habits. What was once a nefarious scheme in a Hollywood blockbuster seems poised to become a reality.

Recent announcements by Elon Musk and Facebook about brain-computer interface (BCI) technology are just the latest headlines in an ongoing science-fiction-becomes-reality story.

BCIs use brain signals to control objects in the outside world. They’re a potentially world-changing innovation – imagine being paralyzed but able to “reach” for something with a prosthetic arm just by thinking about it. But the revolutionary technology also raises concerns. Here at the University of Washington’s Center for Sensorimotor Neural Engineering (CSNE) we and our colleagues are researching BCI technology – and a crucial part of that includes working on issues such as neuroethics and neural security. Ethicists and engineers are working together to understand and quantify risks and develop ways to protect the public now.

Picking up on P300 signals

All BCI technology relies on being able to collect information from a brain that a device can then use or act on in some way. There are numerous places from which signals can be recorded, as well as infinite ways the data can be analyzed, so there are many possibilities for how a BCI can be used.

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.