Tag: biotechnology

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In the Journals–March 2017, Part II by Julia Kowalski

This is Part II of March’s article round-up. You can find part I here.

In addition to the articles below, Theory, Culture and Society features an interview with Michel Foucault from 1983.

New Genetics and Society

Everything and nothing: regulating embryo research in Canada

Alana Cattapan & Dave Snow

This article examines how medical and scientific professionals experience and engage with the governance of embryo research in Canada. Drawing on the history of embryo regulation in Canada and the findings of a survey conducted with lab directors in Canadian fertility clinics, we identify a disjuncture between the rules established by legislation, regulations, and research ethics guidelines and the real-life experiences of professionals in the field. This disjuncture, we argue, is the result of both the absence of implementation mechanisms that would give substance to the governing framework, as well as an inability on the part of medical and scientific professionals to engage in robust self-regulation. Overall, we demonstrate that in an ethically charged and highly technical area of policy-making like embryonic research, clarity about the roles and responsibilities of government and professionals in policy-making and implementation is critical to effective governance.

Not just about “the science”: science education and attitudes to genetically modified foods among women in Australia

Heather J. Bray & Rachel A. Ankeny

Previous studies investigating attitudes to genetically modified (GM) foods suggest a correlation between negative attitudes and low levels of science education, both of which are associated with women. In a qualitative focus group study of Australian women with diverse levels of education, we found attitudes to GM foods were part of a complex process of making “good” food decisions, which included other factors such as locally produced, fresh/natural, healthy and nutritious, and convenient.

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.

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The First Cut is the Deepest

March 23, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

The First Cut is the Deepest

Last week, President Trump publicly unveiled his 2018 budget proposal. If left unchanged, that financial blueprint would increase US federal defense spending by more than $50 billion, while also appropriating billions more to bolster immigration enforcement and build a 2,000 mile-long wall along the US border with Mexico. A self-proclaimed deficit hawk, the President would offset those increased expenditures will sharp cuts to the US Departments of State, Energy, Health and Human Services, and the US Environmental Protection Agency.

In sharp contrast to campaign trail promises to boost the economy, create jobs, and protect Americans at home and abroad, however, Trump’s 2018 budget is likely to do the exact opposite. Consider, for example, the proposal to cut nearly $6 billion from the US National Institutes of Health (NIH).

Made up of 27 different institutions and centers, the NIH is the largest supporter of biomedical research in the world. Through the NIH or other funding agencies, the federal government supports almost half of all the biomedical research in the US. Private businesses support another quarter, and the remainder of biomedical research support comes from state governments and nonprofit organizations.

With an annual operating budget of $30 billion, the NIH provides training and support to thousands of scientists at its main campus in Bethesda, Maryland. Moreover, through a system of extramural grants and cooperative agreements, the NIH provides financial support for research-related programs to over 2,600 institutions around the country, creating more than 300,000 full- and part-time jobs.

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.

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JOB OPPORTUNITY: The Petrie-Flom Center is searching for a new Executive Director!

Executive Director The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics Harvard Law School, Cambridge, MA Learn more and apply now online! Duties & Responsibilities The Executive Director works in partnership with the Faculty Director on strategic planning and … 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.

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The Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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.

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Patient advocates often in cahoots with industry

Over the past few decades, hundreds of patient-advocacy organizations have emerged in the United States, promoting disease research and influencing legislation and FDA and health insurer policies. A new study has revealed that a large proportion of these organizations have funding or other connections with drug or medical device makers, but do not adequately disclose these connections.

The study, led by medical ethicists at the Perelman School of Medicine at the University of Pennsylvania and published in the New England Journal of Medicine, suggests that patient advocacy organizations should acknowledge industry connections.

Media reports have highlighted the fact that some industry-funded patient-advocacy organizations support the industry line on policy issues, for example by failing to support drug-price reform measures, and by pushing insurers to cover expensive drugs whose benefits to patients are questionable.

In the new study, the team examined websites and annual reports for 104 US-based patient-advocacy organizations with annual revenues of US$7.5 million or more.

Results showed that the vast majority received industry funding. More than 80% explicitly reported it, and most of the rest left open the possibility by providing no donor information. Only one of the 104 stated plainly that it did not accept industry funding.

Information on donations was typically provided in broad ranges, and in some cases not disclosed at all. But, among the 59 organizations that published donated amounts, 23 reported receiving at least $1 million annually.

The study revealed other connections to industry besides financial support. More than one-third of the reviewed organizations had one or more board members who were also company executives.

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.

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Citizen-Led Bioethics for the Age of Citizen Science: CRexit, BioEXIT, and Popular Bioethics Uprisings

By Barbara J. Evans, MS, PhD, JD, LLM (Alumnae College Professor of Law; Director, Center on Biotechnology & Law, University of Houston) This post is part of a series on how patients are creating the future of medicine.  The introduction … 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.

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Dangerous Love and Anti-Love Drugs: Neuroethics & Public Health Problems

By Kelsey Drewry
Kelsey Drewry is a student in the Master of Arts in Bioethics program at the Emory University Center for Ethics where she works as a graduate assistant for the Healthcare Ethics Consortium. Her current research focuses on computational linguistic analysis of health narrative data, and the use of illness narrative for informing clinical practice of supportive care for patients with neurodegenerative disorders.
The half-priced heart-shaped boxes of chocolates lining grocery store shelves serve as an undeniable marker of the recent holiday. Replete with conceptions of idyllic romance, Valentine’s Day provides an opportunity to celebrate partnership, commitment, and love. However, for those experiencing heartbreak or unrequited love, Cupid may be a harbinger of suffering rather than giddy affection.

The transition from love to pain is an incredibly common experience, and one that is formative for many. The extent of character building in heartbreak and other negative affection experiences is bounded, though, by certain types of “dangerous love”. According to Brian Earp and colleagues, this classification might include domestic abuse, pedophilia, or even jealousy-induced homicide (Earp et al 2013). The suffering associated with these cases surpasses any beneficial emotional development, leading instead to potential enduring physical and psychological harms. Instances of “dangerous love” might become the targets for “drugs that manipulate brain systems at whim to enhance or diminish our love for one another” (Young 2009, 148), which seem to be a reasonable potential product of current trajectories of neuropharmocological research.
Image courtesy of Flikr

These “anti-love” drugs are certainly beneficently intended, and may indeed be of great value in some instances.

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.

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“Global Bioethics: An Introduction”- A Reflection on the Globalisation of Bioethics

By: Robyn Perry-Thomas

Reaching a consensus on a comprehensive definition of global bioethics and its importance is surprisingly difficult. Yet, Professor Henk Ten Have has taken on this challenge, and much more, with ease, in his 2016 book- ‘Global Bioethics: An Introduction’1. In his book, Have approaches global bioethics in a stepwise manner. Medical ethics gave rise to bioethics, eventually leading to global bioethics.

Globalisation has meant that our ethical problems cross international borders, and consequently cultural, political and moral boundaries. Have leaves no doubt that global bioethics is of upmost relevance to 21st century living and conventional bioethical topics are discussed in a refreshing and relevant context.

However there is no bioethical consensus in this new territory of global bioethics. For how can a comprehensive, binding consensus be reached on such diverse and complex topics as reproductive technology, commercial surrogacy and the rights of the dying?

Whilst the laws in some countries may be different for cultural or religious reasons (for example, women travelling from Ireland to other countries in order to obtain an abortion), in many cases the fundamental driver for medical tourism is a clear discrepancy in economic power between the ‘tourists’ and their chosen country. This forms the very essence of medical tourism and, especially due to the implied risk of exploitation, should form a significant consideration for all concerned with global bioethics.

Yet, as reinforced by Have, bioethics goes beyond the individual. Our response to international disasters, regulation of tissue products and genetic research all fall under the realm of global bioethics.

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.

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The National Academy of Sciences Expands its Approval for Gene Editing

by Keisha Ray, Ph.D.

This week the National Academy of Sciences (NAS) released a report giving their support for altering heritable genes when previously the NAS only supported altering uninheritable genes. Although it gave very special conditions in which altering human eggs, sperm, and embryos would be acceptable, giving their seal of approval to any alteration of the human germline is a revolutionary move for the current and future status of genetic engineering for a few reasons:

  1. Expanding Clinical Research

Genetic engineering is already practiced for non-heritable genes. Genes that are known to cause chronic and debilitating diseases are the subject of clinical trials all across the world. However, with the advancement of affordable gene editing technology like CRISPR, some bioethicists, physicians, and scientists have changed their stance on what was once seen as an unethical use of genetic engineering—altering genes that could be passed down to offspring. Now the NAS endorses extending the benefits of gene editing to preventing, curing, and treating chronic, deadly, and heritable diseases, when there is no alternative intervention. Changing their ethical stance on gene editing will expand clinical research and change how research funds are allocated. It will give laboratories new avenues in which to pursue cures for diseases that were once thought incurable. Inevitably, there will be also be an increase in lively debate among bioethicists about what the NAS’s new report means for the relationship between science, ethics, and patient care.

  1. Research Arms-Race

The release of this report, for better or for worse, puts the United States on the same playing field as other countries who have already begun to use gene editing tools to alter the germline, particularly in embryos.

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.

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The Formation of the Global Bioethics Initiative Featured in IMPAKTER

In this series of global leaders, we will highlight an international non-profit healthcare organization that provides a bridge between patient care and the complexities of medicine. This area of healthcare is often referred to as Bioethics and in 2011, Dr. Ana Lita and Dr. Charles Debrovner co-founded Global Bioethics Initiative (GBI). This organization offers an all-inclusive resource that allow young and established healthcare professionals a place to learn about essential information about the ethical dilemmas in medicine. GBI is unique in their approach in that they make Bioethics approachable and tangible to everyone. This first installment of this series will layout the reasons behind making bioethics global, the reasons for forming GBI, and their educational programs.

WHY GLOBAL BIOETHICS?

People are beginning to appreciate more deeply the bonds between human well-being and the unrelenting pace of medical and technological advances. The progress made in life sciences, medicine and biotechnology in recent years has provided us with exciting and novel ways of treating, preventing, and curing human diseases. Some (relatively) recent notable and controversial developments in medical science and biotechnology include: markets in organs and transplantation therapy, the accessibility of biotechnological developments in reproductive healthcare, genetic testing and gene therapy, the End-of-Life, the “right to die” and palliative care, as well as life extension, healthy aging and regenerative medicine. While the positive impact of these advances on individuals and societies must be applauded, the ethical consequences of such developments necessitate our attention. The increasing power that new biotechnologies offer us requires that we consider not only whether something can be done, but whether it should it be done.

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.