Tag: genetic research

Bioethics News

Inside The Lab Where Scientists Are Editing DNA In Human Embryos

Human eggs are the key starting point for the groundbreaking experiments underway in this lab. It’s run by Shoukhrat Mitalipov, a biologist who’s been on the cutting edge of embryonic genetic research for decades

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

In the Journals – May 2017 by Livia Garofalo

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards.

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 Fingerprints and National Security

by Beau P. Sperry, Megan Allyse & Richard R. Sharp

Biometric surveillance is rapidly becoming an integral component of national security policy and practice. Biometric surveillance can include fingerprinting, facial and voice recognition, and iris scans. In 2002, in response to the September 11th attacks, the United States passed the Enhanced Border Security and Visa Entry Reform Act, which requires visa applicants to submit ten fingerprints to a national security database. Japan has been collecting fingerprints from its visitors since 2007 and many European nations are following suit, including the United Kingdom. Singapore began fingerprinting visitors in 2016, while the United Arab Emirates has gone a step further and now collects iris scans. Across the globe, national biometric databases are expanding, such as India’s Aadhaar program, which has gathered fingerprints and iris scans on more than one billion Indian citizens.

In recent years, countries like Kuwait have expanded biometric surveillance to include genetic data. In 2015, the Kuwaiti government enacted a law mandating the collection and retention of DNA samples from all citizens, residents, and travelers to Kuwait. The law was passed in response to a suicide bombing at a Shia mosque in Kuwait City that killed twenty-seven individuals and wounded 227 more. The goal of the law is to support national efforts to identify terrorists and to provide a resource for the identification of human remains in the aftermath of a major terrorist attack. Such laws signal increasing awareness of the potential utility of DNA analysis in national surveillance and security activities.

Unlike other identification methods, DNA provides a unique, unalterable, and easily obtained means of identification: even a small buccal swab can provide identifiable DNA for years.

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

Psychiatric Genetics in a Risk Society

by Nicole Martinez-Martin

Kong and colleagues raise substantive areas of ethical concern regarding the translation of psychiatric genetic research into clinical and public health contexts. They recognize that psychiatric genomic research itself does not support essentialist claims, but point out that, nonetheless, the translation of genetic research to these new contexts may reinforce essentialist views of mental illness. Underlying Kong and colleagues’ analysis is recognition of the ways in which certain epistemological orientations, embedded within culture and institutional practices, may shape the translation of genetic research.…

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

Why It Might Be Time to Reconsider the Money Spent on Genetics Research

March 3, 2017

(The Conversation) – Right now, optimism about the potential of genetics is high. “Breakthroughs” in genetics are reported with enthusiasm, and genetics research continues to comprise a large proportion of all funded research. Funding is often awarded because researchers claim once we understand the genetic components of a disease like cancer, we will be able to better predict, prevent, and even cure disease. Future cures are often reported long before they’re available. However, some scientists and medical specialists are starting to question whether the money invested in genetic research is well spent. Are we getting the promised benefits from this investment?

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

Why the CRISPR Patent Verdict Isn’t the End of the Story

February 22, 2017

(Nature) – Berkeley filed for a patent earlier, but the USPTO granted the Broad’s patents first — and this week upheld them. There are high stakes involved in the ruling. The holder of key patents could make millions of dollars from CRISPR–Cas9’s applications in industry: already, the technique has speeded up genetic research, and scientists are using it to develop disease-resistant livestock and treatments for human diseases. But the fight for patent rights to CRISPR technology is by no means over. Here are four reasons why.

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: 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.

Bioethics Blogs

The privacy debate over research with your blood and tissue

Many people don’t realize that their leftover tissue, blood or other samples – otherwise known as “biospecimens” – taken during a visit to the doctor or hospital might be stripped of identifying information and used in research without their consent.

This makes some people uncomfortable.

So when the federal government decided to revise its “Common Rule” regulations governing federally funded research involving humans for the first time in decades, the draft revision included a proposal to require consent for all research with biospecimens, whether they have identifying information accompanying them or not. The original regulations required a person’s consent for research with biospecimens only if they had information with them that made them identifiable.

But when the updated Common Rule was released on Jan. 18, there was no change to this part of the regulation.

Human research regulations need to keep up with major advances in technology. They also need to balance enabling scientific progress with attempting to ensure safety and privacy for human participants in research.

So why wasn’t the proposal requiring consent for all biospecimen research adopted, and how do the new regulations recognize people’s concern in what happens to pieces of themselves in the future?

Research with nonidentified biospecimens doesn’t require consent.
Blood vials via www.shutterstock.com

Why we need human biospecimens for research

Exciting new research projects, like the Precision Medicine Initiative (PMI), aim to personalize medical interventions and therapies for things like cancer care.

But knowing how to personalize treatment requires comparing data from thousands of biospecimens to discover the relationship between genetic variation, health behaviors and medical outcomes.

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 – December 2016, Part II by Anna Zogas

Here is the second part of our article roundup for December (find the first set of articles here). Happy reading, and happy new year!

New Genetics and Society

Redrawing the boundary of medical expertise: medically assisted reproduction and the debate on Italian bioconstitutionalism
Volha Parfenchyk

In 2004, the Italian Parliament passed a controversial law on medically assisted reproduction (Law 40/2004). The Law obliged clinicians to create a maximum of three embryos during one in vitro fertilization (IVF) cycle and transfer them simultaneously into the patient’s uterus. With this “three embryo” standard, the Parliament sought to secure the realization of rights of IVF embryos. Drawing on the concepts of boundary-work and bioconstitutionalism, this article explores the role that the constitutional obligations of the Italian State towards its citizens, including IVF embryos as its new “citizen subjects,” played in how it envisaged and demarcated the professional boundaries of medical expertise. It argues that the latter depended upon how it balanced its commitments to protect the rights of IVF embryos and those of adult citizens. As such, the demarcation of the jurisdictional boundaries of medical expertise, and the definition of constitutional rights, formed two sides of the same governing project.

Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation
Klaus Hoeyer

In this paper, I argue that uncertainty and nonknowledge, and not just research results, can be important vehicles of translation through which genetic research participation comes to affect the lives of research participants. Based on interviews with participants in a genetic research project, I outline epistemic, emotional, relational and moral implications of research participation.

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.