Tag: genetic privacy

Bioethics News

Rara avis in terris: a new abortion argument

It’s a rare week that sees a new twist in the decades-old abortion debate. But this is that week.

Writing in the journal Bioethics, two researchers from the University of Toronto contend that that women have a right to abortion, but no right to kill a foetus. In support of their startling argument they invoke bioethicists Peter Singer and Judith Jarvis Thompson, two of the most intrepid supporters of abortion rights.

This needs a bit of unpacking, so here goes.

Eric Mathison and Jeremy Davis point out that theorists like Singer and Thompson have distinguished between the right to an abortion (expelling an unborn child from the womb) and the right to kill an independent foetus. Since abortion is nearly always lethal with current technology, abortion is identified with killing. But theoretically, they are distinct.

In a well-known passage Thompson says:

I have argued that you are not morally required to spend nine months in bed, sustaining the life of that violinist; but to say this is by no means to say that if, when you unplug yourself, there is a miracle and he survives, you then have a right to turn round and slit his throat. You may detach yourself even if this costs him his life; you have no right to be guaranteed his death, by some other means, if unplugging yourself does not kill him.

And Singer writes, with Deane Wells

Freedom to choose what is to happen to one’s body is one thing; freedom to insist on the death of a being that is capable of living outside one’s body is another.

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

DNA papers, please

Kuwait is planning to build a complete DNA database of not just citizens but all other residents and temporary visitorsThe motivation is claimed to be antiterrorism (the universal motivation!) and fighting crime. Many are outraged, from local lawyers over a UN human rights committee to the European Society of Human Genetics, and think that it will not be very helpful against terrorism (how does having the DNA of a suicide bomber help after the fact?) Rather, there are reasons to worry about misuse in paternity testing (Kuwait has strict adultery laws),  and in the politics of citizenship (which provides many benefits): it is strictly circumscribed to paternal descendants of the original Kuwaiti settlers, and there is significant discrimination against people with no recognized paternity such as the Bidun minority. Plus, and this might be another strong motivation for many of the scientists protesting against the law, it might put off public willingness to donate their genomes into research databases where they actually do some good. Obviously it might also put visitors off visiting – would, for example, foreign heads of state accept leaving their genome in the hands of another state? Not to mention the discovery of adultery in ruling families – there is a certain gamble in doing this.

Overall, it seems few outside the Kuwaiti government are cheering for the law. When I recently participated in a panel discussion organised by the BSA at the Wellcome Collection about genetic privacy, at the question “Would anybody here accept mandatory genetic collection?” only one or two hands rose in the large audience. When

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

Forgotten Stories of the Eugenic Age #5: Creating Super-People

The Birth of Venus by Sandro Botticelli, 1480s

[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

“Can science produce a superman?” science writer Waldemar Kaempffert wondered in the New York Times in 1928. “What kind of a superman do we want? And who shall dictate his specifications?”

In the early twentieth century, new genetic discoveries prompted supporters of eugenics to ponder the potential creation and characteristics of a superior human race. Many believed that encouraging the eugenically “fit” to mate and isolating or sterilizing the eugenically “unfit” would yield over time a superior population. They argued that breeding a better race represented the next step in human evolution. After all, careful husbandry had improved crops and livestock. Surely the production of “human thoroughbreds” could not be much different.

“Scientific” Creation
With new scientific knowledge and technologies, eugenists believed that they at last had the tools to create improved people. They were particularly interested in developing technologies for assisted reproduction, including the human application of animal husbandry techniques like artificial insemination. Dr. Julian Huxley, grandson of champion of the theory of evolution T. H. Huxley, predicted that such techniques would allow eugenically fit men and women to marry whomever they chose, but—regardless of their partners’ fertility—have children with third parties who had been specially selected for their genetic qualities. (Those who might object to this cold calculation were merely exhibiting “outworn sentimentalism,” said Huxley.)

Exhibiting similar thinking, Dr.

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

“Moonshot Medicine”: Putative Precision vs. Messy Genomes

Like so many medical terms, “precision medicine” is a combination of both wishful thinking and obfuscation.  In this case, it also carries a somewhat unsettling suggestion: if medicine has not up until now been precise, then what has it been? 

Precision medicine started being touted in the specialized journals in the late aughts as part of a “new era” being ushered in by coordinated and integrated care, fiscal transparency, and patient-centered practice.  It was one of a suite of approaches that promised to bring costs down while improving outcomes.   The idea was that by looking at drugs and other therapies according to how they succeeded (or didn’t) in people sharing particular gene variations and similar physical traits, physicians could make more intelligent choices patient-by-patient, selecting the treatment with a greater chance of working. 

Big Pharma saw promise in the approach and made strategic partnerships (Pfizer and Medco Health Solutions in 2011, for example, and Novartis and Genoptix that same year); startups and researchers rushed to secure patents; while medical groups such as the American Society of Clinical Oncology devoted sessions at their annual conferences to precision medicine’s potential benefits now that speedier gene sequencing was bringing costs down sufficiently to make it possible to contemplate tailor-making cancer drugs.

At the same time, some in the burgeoning field saw major structural hurdles.  For example, most work on biomarkers—the substances or physical signs that a disease is present or a drug is working—is done in university and government research labs, and it takes time for any given biomarker to be proven accurate, as well as to be adopted by physicians in the clinic. 

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

On Being a Hypocrite

A piece appeared in The Atlantic a few days ago that aims to prick the perceived bubble of professional ethicists.  In fact, the headline is pretty hostile: THE HYPOCRISY OF PROFESSIONAL ETHICISTS.  Blimey.  The sub-headline doesn’t pull its punches either: “Even people who decide what’s right and wrong for a living don’t always behave well.”

I know that headlines are frequently not written by the person whose article they head, and so these won’t tell us much about the article – but, even so, I’m beginning to twitch.  Do I decide what’s right and wrong for a living?  I don’t think I do.  I possibly thought that that’s what an ethicist does when I was a fresher, or at school – but I’m not certain I did even then.  And even if I did, I discovered pretty quickly that it’s quite a bit more complicated than that.  For sure, I think about what’s right and wrong, and about what “right” and “wrong” mean; and I might even aspire to make the occasional discovery about right and wrong (or at least about how best to think about right and wrong).*  But as for deciding what is right and wrong?  Naaaah.

Anyway: to the substance of the piece, which – to be fair – is more moderate in tone, pointing out that “those who ponder big questions for a living don’t necessarily behave better, or think more clearly, than regular people do”.  That’s probably accurate enough, at least a good amount of the time.  I’d like to think that I’m thinking better about a particular problem than most people when I’m working on it; but I’m also thinking better about in that context than I would be at other times.

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

Residual Dried Blood and New Born Screening in Minnesota

Note: The Bioethics Program blog is moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

by Courtney Jarboe, Bioethics Program Student

In Minnesota, residual dried blood (RDB) samples collected for newborn screening had been stored, retained, and used for research without parental consent. It had been presumed that the Minnesota Department of Health (MDH) had the statutory authority to do so. In 2011, the Minnesota Supreme Court ruled (in the case of Bearder v. Minnesota) that the newborn screening program was subject to the Genetic Privacy Act (2006) (pdf), which requires written consent for secondary uses of genetic information. This ruling led to revisions of newborn screening legislation and the destruction of 1.1 million newborn screening RDB samples. Since the legislative dust has settled, MDH has begun aggressive educational campaigns to rebuild trust and awareness between parents and healthcare providers in Minnesota and address information gaps in the public’s understanding of the newborn screening program and the associated research.

In February of this year, I received a letter from the Citizen’s Council for Health Freedom (CCHF), an organization that actively supported the nine families in Bearder v. Minnesota who sued to stop the use of RDB samples for research. (see image) The letter details CCHF’s concerns about the MDH newborn screening program. The letter also suggests that MDH can use the RDB and the associated child’s DNA without parent consent. Included with the letter were a letter addressed to MDH and a copy of the MDH ‘Directive to Destroy’ form.

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.