Tag: genomics

Bioethics Blogs

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

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

Navigating the Research-Clinical Interface in Genomic Medicine: Challenging the Traditional Dichotomy Between Research & Clinical Care

By Susan M. Wolf & Wylie Burke Translational genomics challenges the traditional view that research and clinical care are distinct activities that should be governed by separate norms, rules, and law. Beginning with the Belmont Report and emergence of regulations governing … Continue reading

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

Vacancy: Researcher in Global Health Bioethics

The newly established Wellcome Centre for Ethics and Humanities is currently advertising for the post of Researcher in Global Health Bioethics – Grade 7: £31,076 – £38,183 p.a. The post is full-time (part-time considered) and fixed-term for 3 years.

Based within the Nuffield Department of Population Health, the newly established Wellcome Centre for Ethics and Humanities is a collaboration between the Ethox Centre; the Oxford Neuroscience, Ethics and Society Group; the Oxford Uehiro Centre for Practical Ethics; and the Wellcome Unit for History of Medicine. The Centre will conduct multidisciplinary research on the ethical challenges presented by advances in neuroscience, data science, genomics, and global health.

Working as part of a new and exciting research group bringing together researchers in the humanities with biomedical scientists, you will conduct collaborative research on the ethical issues arising in research in genomics and infectious diseases. Your key responsibilities will include managing your own academic research activities in the context of a collaborative team, analysing and interpreting quantitative and qualitative data, contributing towards research publications and providing guidance to junior members of the group.

You will have a PhD/DPhil (in philosophy, ethics, bioethics or a related field), relevant research experience and previous experience of contributing to publications/presentations. You will also have excellent communication and interpersonal skills and the ability to work as part of an interdisciplinary team.

The post is full-time (part-time considered) and fixed-term for 3 years.

The closing date for applications is 12.00 noon on 21 September 2017.

Full details about the post, including how to apply.

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

A DNA App Store Is Here, but Proceed with Caution

July 24, 2017

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A Silicon Valley startup called Helix is betting on the notion that not only do people want to learn more about their DNA, but they’ll also pay to keep interacting with it.

Today the company, which was founded in 2015 with $100 million from genomics giant Illumina, is launching its much-anticipated online hub where people can digitally explore their genetic code by downloading different applications on their computers or mobile devices. Think of it as an app store for your genome (see “10 Breakthrough Technologies 2016: DNA App Store”).

Personalized genetic information has become an affordable commodity. The early success of leaders like 23andMe and AncestryDNA, which sell DNA testing kits for $200 or less, has ushered in a wave of new companies offering direct-to-consumer genetic tests for everything from ancestry to the wine you should drink based on your DNA.

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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

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

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

Confronting Medicine in the Holocaust & Beyond

By Hedy S. Wald

Galilee, Israel, May 7-11, 2017. I was privileged to be at the Second International Scholars Workshop on “Medicine in the Holocaust and Beyond.” Why so meaningful?  Why so needed? 140 purposeful, passionate scholars from 17 countries delved into the past history of medicine at its worst in order to inform the future.  From 1933-1945, presumed healers within mainstream medicine (sworn to uphold the Hippocratic Oath) turned into killers (1).  Yes, medical ethics in Nazi-era medical school curricula existed, yet included “unequal worth of human beings, authoritative role of the physician, and priority of public health over individual-patient care”(2).  In Western Galilee College, (Akko), Bar-Ilan University Faculty of Health Sciences (Safed), and Galilee Medical Center and Ghetto Fighters’ Museum, (both in Nahariya), historians, physicians, nurses, medical and university educators, medical students, ethicists and more gathered to grapple with this history and consider how learning about medicine in the Holocaust can support healthy professional identity formation with a moral compass for navigating the future of medical practice with issues such as prejudice, assisted reproduction and suicide, resource allocation, obtaining valid informed consent, and challenges of genomics and technology expansion (3)…

The conference, in essence, served as a lens for the here and now, reinforcing my contention (and others’) that history of medicine in the Holocaust curricula including confronting the Nazi physicians’ and scientific establishment’s euthanasia of “lives unworthy of life,” forced sterilizations, horrific experimentation on their victims, and medicalized genocide (leading to the destruction of a third of the European Jewish population and many others) is a “moral imperative” in healthcare professions education (1,4).

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 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 Blogs

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.