Tag: dna databases

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 News

US Police Agencies with Their Own DNA Databases Stir Debate

March 6, 2017

(SeattlePi) – Dozens of police departments around the U.S. are amassing their own DNA databases to track criminals, a move critics say is a way around regulations governing state and national databases that restrict who can provide genetic samples and how long that information is held. The local agencies create the rules for their databases, in some cases allowing samples to be taken from children or from people never arrested for a crime. Police chiefs say having their own collections helps them solve cases faster because they can avoid the backlogs that plague state and federal repositories.

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 — March 2016, Part II by Anna Zogas

Here is the second half of our March roundup of journal articles. There are also two Special Issues out this month that may be of interest, including the current Medical Anthropology Quarterly, and their contents are posted here.

American Anthropologist 

Love and Resurrection: Remaking Life and Death in Contemporary Russia
Anya Bernstein

In this article, I discuss two “crimes of compassion”—one a mercy killing and the other what I refer to as a “mercy resurrection”—as key illustrations of the changing landscape of necropolitical governmentality in Russia some 20 years after the collapse of the Soviet Union. Such practices present unanticipated challenges to the state control of death, producing irregular yet ultimately normative narratives of what counts as pathological, as life and death, and as the meaning of suffering, love, and compassion. I argue that these cases ultimately present two sides of the same coin, evincing a politics of life that, intentionally or not, defies the power of the state over death and its monopoly position as the purveyor of death and immortality. They also suggest alternative practices of caregiving to the dead and dying. In doing all this, they enter a legally ambiguous zone between violence and compassion, martyrdom and savagery, madness and mercy.

“We Are All Carrying Someone Else’s Child!”: Relatedness and Relationships in Third-Party Reproduction
Zsuzsa Berend

In this article, I explore surrogates’ rich, diverse, and collective negotiations of relatedness and relationships on the largest U.S. surrogacy support website. Surrogates reconfigure existing kinship understandings and maintain that intent and love are firmer bases of parenthood than biogenetic connection.

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

Biopolitical News of 2015

For controversy and consequence, no story in 2015 came close to the rapidly developing CRISPR-Cas9 “gene editing” tools, and the prospect of their use to modify the human germline. The 2015 wave of news about gene editing swelled to pervade many of our concerns, from inheritable genetic modification to assisted reproduction, from disability and racial justice to synthetic biology, from the legacy of eugenics to the general culture of biotech.

Of course, CRISPR wasn’t the only news of the year. The UK approved a form of inheritable genetic modification based on nuclear genome transfer techniques, based in part on a public consultation process that was represented as demonstrating broad support, but that actually did not. Biobanks and DNA databases grew ever larger, raising both hopes and concerns. Research on all kinds of stem cells continued, with a combination of advances, scandals, and major financial concerns. Products made using synthetic biology techniques began reaching the market. Cross-border surrogacy dominated the news about assisted reproduction.

The Center for Genetics and Society continues to work to raise public awareness, inform policy debates, and include a wide range of public interest perspectives in the regulatory and governance decisions that shape the way human assisted reproduction and biotechnologies develop. Here is a breakdown of highlights roughly grouped by topic:

INHERITABLE GENETIC MODIFICATION

In 2015, CGS’s core organizational concern about human heritable genetic modification moved from the realm of scientific fiction to a thinkable clinical prospect.

In February, the UK Parliament carved out an exception to its law prohibiting human germline modification, allowing the HFEA to begin licensing clinics to create children via “3-person IVF,” also known as mitochondrial manipulation or nuclear genome transfer.

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 Surveillance: Consumer Genomics and DNA Forensics

“If we each keep our genetic information secret, then we’re all going to die.”

So says Bill Maris, founder, President and CEO of Google Ventures, that $2B investment firm with stakes in more than 280 startups, looking to spend $425M on anti-aging and life extension this year.

Maris isn’t simply trying (successfully) to make headlines, he’s looking to drive a consumer genomics market by convincing people to hand over their genetic material for research. He isn’t alone on this front. 23andMe and Ancestry.com have also engaged in grand, seductive promises: Learn your carrier status! Meet your long-lost relatives! Learn how “African” your DNA is, based on “ancestry informative markers!”

This kind of hype downplays the limits and obstacles to providing reliable genetic information and using it to generate beneficial health impacts. It completely obscures the extent to which research as a system—corporate, academic, governmental, what have you—has been co-opted by private gains and has proceeded with little-to-no accountability to the public good and health. And it elides the real drivers of the genomics business model: mass data collection and brokering data access.

Much of the recent reporting on consumer genomics has focused on the FDA’s battle with 23andMe about selling clinically unreliable health information, and on business developments in the sector. Earlier this month, we learned that Ancestry.com is in talks with FDA to start selling health information. Last week, the big news was that 23andMe has been cleared by the FDA to begin selling carrier screening tests for 36 genetic variants.

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: September (Part 2) by Melanie Boeckmann

Health, Risk & Society

Towards a better understanding of risk-taking: key concepts, dimensions and perspectives

Jens O. Zinn

The current study of risk is dominated by the risk minimisation approach that frames risk and risk-taking as something undesirable that should be avoided as much as possible. However, this approach to risk often fails to consider the broader conditions and motivations of risk-taking and to examine why people expose themselves to danger. In this editorial, I explore two key concepts – voluntary risk-taking and risk behaviour – considering the ways in which they represent opposing views in risk studies. I make the case for a broader approach to ‘risk-taking’ that addresses the complex tensions between risk-taking and risk aversion in the social, natural and material contexts of everyday life. I examine how risk-taking is characterised by varying degrees of control over decision-making, different mixes of motives, the impact of socio-structural factors, forms of routinisation and habitual risk-taking, how power is involved in risk-taking and how identity is used to challenge experts’ views. I discuss the role of stigma in risk-taking and how general societal contexts and organisational cultures influence the risk-taking. While there is increasing research on risk-taking, there is still scope for further publications that will advance our understanding of risk-taking in its social contexts, and in this editorial, I address issues that will form the basis of a forthcoming special issue of Health, Risk & Society.

‘Fuzzy’ virus: indeterminate influenza biology, diagnosis and surveillance in the risk ontologies of the general public in time of pandemics

Davina Lohm, Mark Davis, Paul Flowers & Niamh Stephenson

Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy.

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

California and your DNA: Is it a healthy relationship?

98% of all babies born in the United States have a tiny prick of their blood screened for a few serious diseases within the first few days of their lives. This test has been hugely successful at catching and beginning early treatment for inherited diseases such as sickle cell anemia and severe combined immunodeficiency.

Pressure is now mounting on multiple fronts to take advantage of this wellspring of potential genetic information. In the past, some states, most notably Texas, have gotten in trouble for their willingness to give it up for uses with which many parents are uncomfortable.

Now, attention has turned to California. In an article in U-T San Diego, the Council for Responsible Genetics’ Jeremy Gruber points out that while 19 states store these samples for more than two years, only California and a few other states keep them permanently and rent them out to researchers for a fee.

While the state’s Department of Public Health asserts that the samples are anonymous, we’ve been learning over and over again that DNA is rarely truly anonymous.

For example, the UK Department of Health finally acknowledged in correspondence with The Guardian that the genomic information in the 100,000 Genome Project will not actually be anonymous, but “pseudonymised” – though they have continued use of the former term publicly because apparently “the term ‘pseudonymisation’ is not widely understood.”

In the US, each state is rapidly building its criminal DNA database, in some cases using DNA from people never convicted of a crime. In an article in The Sacramento Bee, Jeremy B.

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

Biopolitical News of 2014

2014 has been another busy, and decidedly mixed, year in biopolitics.

Some technical advances suggest that gene therapies and genomics-based personalized medicine may be coming closer, while a few advocates seize on the same news to speculate about making irreversible, dangerous, and socially pernicious changes to the human genome.

The need for regulation of new human biotechnologies became both more obvious and more widely accepted this year, but simultaneously there were efforts (which may succeed in the UK) to shatter long-accepted norms by allowing a form of inheritable genetic modification based on nuclear genome transfer techniques.

Other biopolitical developments also abounded, from commercial surrogacy, egg freezing parties and early-pregnancy fetal gene tests, to police DNA databases and resurgent claims about race as biology. These and yet more new biotech products and practices bring us ever closer to unprecedented personal and societal dilemmas and decisions. 

The Center for Genetics and Society (CGS) continues to monitor all of these developments, and attempts to encourage their responsible usage and effective societal governance. Many of the following issues inevitably blend into each other, but here is a brief overview of the most important biopolitical developments of 2014, roughly grouped by topic:

Surrogacy

A number of countries grappled with how to regulate surrogacy in 2014. Ireland published draft surrogacy legislation in February; Toronto saw a boom in surrogacy despite it being only semi-legal; India took further steps to determine how to regulate its huge surrogacy market.

International surrogacy arrangements came under increasing media scrutiny, including a three-part front-page series in The New York Times (1, 2, 3).

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.