Talking to the Absent?

Dr. Adrian M. Owen, a British neuroscientist currently working at the University of Western Ontario, recently presented his research at the University of Alberta.  The research team at UWO, led by Damian Cruse and Adrian M. Owen, claims to have found a way to test for consciousness in patients utterly unresponsive.  Using an fMRI scan to take images of patients’ brains while asking them to imagine certain things (either playing tennis or walking through a house) as a means of responding “yes” or “no” to questions, revealed, according to Dr. Owen, that at least 20% of patients labelled as being in vegetative states are in fact conscious (at least some of the time), but merely unable to communicate with the outside world that they in fact are conscious.  Because the mental states associated with playing tennis are consistently and ubiquitously correlated with a distinctly different part of the brain than mental states associated with spatial location, the UWO team deemed the “tennis-playing” and “house-walking” thoughts to be perfectly suited to code for such distinct responses as affirming or negating something.

The problem with assessing whether or not someone is conscious is that short of asking, all we have at our disposal is diagnoses made based on behavioural outputs (one such output being an affirmative verbal response to the question “are you conscious?”).  However, assessing the level of consciousness of a patient incapable of outward communication of any sort becomes quite difficult.  According to Dr. Owen, 20% of patients previously labelled as being in vegetative states showed signs of consciousness precisely because, thanks to the fMIR scans and the questioning techniques used by the UWO team, they were able to acknowledge their awareness by correctly responding to questions about their personal lives (i.e. questions regarding the names of a parent, the location of their last vacation prior to the accident, etc.).

Such a breakthrough, according to Dr. Owen, could potentially help clinicians make more accurate diagnoses (he cited a current 45% occurrence of misdiagnosis of patients with severe brain damage) and, perhaps even more importantly, it could help shape policies regarding the passive euthanasia of patients like Terri Schiavo.  Here is a New York Times article directly related to Dr. Owen’s research.

There are several questions, in light of Dr. Owen’s research, that come to mind: Is there a problem with passive euthanasia if a patient like Terri could have been asked?  Was there a problem with it (in the case of Terri) regardless of such a possibility?  What if once assessed as conscious and subsequently asked, a patient expressed a wish to be euthanised, but not passively euthanised because of the long and cruel nature of death by starvation and dehydration?  If 20% of patients in Dr. Owen’s study showed signs of consciousness, could there be more?  What should we make of the moral status of individuals who’s mental lives weave in and out of consciousness or consist of some very faint traces of consciousness?  What “amount” of identifiable signs of consciousness is enough?  Is it appropriate at all that consciousness is, as it seems to have become, the moral threshold between life and death?  There are many interesting questions that emerge from this issue more generally as well as the research at UWO more specifically.  For now, as I continue to digest Dr. Owen’s talk, I just pose some of these questions in their raw and unpolished forms, hopefully to get some insightful comments, concerns, other questions, etc., which will certainly aid in my thinking through such issues.

Forced Sterilization for Transgender People in Sweden

An article at Mother Jones looks into an obscure Swedish law that requires those who want to legally change their gender to first get divorced and sterilized. The article uses this law to transition to a discussion on the long history of eugenic practice and sterilization in Sweden — a practice that surprises many, considering the general impression of Sweden as a bastion for liberal ideals and equality.

Sweden is considered extremely gay-friendly, with one of the highest rates of popular support for same-sex marriage, and more than half the population supports gay adoption. Arguing that the current law is both unpopular and abusive, the country’s moderate and liberal parties want to see it repealed. In response, the small but powerful Christian Democrat party formed a coalition with other right-of-center parties to join in upholding the requirement for sterilization. End result: a proposal for new legislation that allows trans—a preferred term for many people who undergo gender reassignment—to be married but continues to force them to be sterilized.

Head on over to Mother Jones to give it a read. Also check out another article about the same story in the Swedish press.

 

 

Gender Stereotyping and Parenthood Dilemmas

In an effort to avoid gender stereotyping, Beck Laxton and partner Kieran Cooper concealed the gender of their son from the world.  The gender neutrally named Sasha has now turned five and is starting school.  Prior to the commencement of formative school years, Sasha has been given the choice to dress in clothes that appealed to him, be they hand-me-downs from an older sister or an older brother.  When Sasha turned five, his parents were forced to reveal his gender, which means that Sasha will have to get used to being perceived as a boy by his peers.  Although the school requires different uniforms for boys and girls, Sasha’s mom is intervening by letting Sasha wear a girl’s blouse with his pants.

Last year, a different couple made a similar decision not to reveal their child’s gender.  Some psychiatric experts voiced their concerns:

“To have a sense of self and personal identity is a critical part of normal healthy development,” Dr. Eugene Beresin, director of training in child and adolescent psychiatry at Massachusetts General Hospital, told ABC News. “This blocks that and sets the child up for bullying, scapegoating and marginalization.”

The article continues:

But as parents well know, bullying is hard for any child to avoid. It’s more important to raise someone who’s confident enough in himself to overcome peer pressure. It’s also important to have his parents have his back.

The question of personal identity is interesting as gender is certainly a big part of it.  However, that’s precisely the problem couples like Beck Laxton and Kieran Cooper are attempting to avoid.  The question of bullying, scapegoating and marginalization is a bit trickier since such actions are certainly a product of dogmatically ingrained gender stereotyping, but they will not cease to exist just because Sasha’s parents have grown past them.  Although bullying may well be hard for any child to avoid, some children do get bullied more than others.  And although Laxton and Cooper are trying to inculcate a sense of self and others in Sasha, which they hope will be lacking gender stereotyping, are they also not sacrificing their child’s emotional and physical safety by setting him up for potential bullying?  It is quite important to raise someone who’s confident enough in him or herself to overcome peer pressure, but it could also be the case that exposing a child to more risk of bullying may have an adverse effect on his or her confidence.

That’s not to say that Sasha will be bullied, but it will depend on his environment.  If Laxton and Cooper chose an appropriate school, perhaps their goal of raising their son to be confident in himself and have a valuable dual perspective on gender will not be compromised by the very gender stereotypes they are attempting to undermine.  “Egalia,” a preschool in Stockholm, Sweden comes to mind (as an example of the kind of environment in which Sasha could flourish).  Staff do not use words like “him” or “her,” but rather a made-up neutral term and students are encouraged to do the same.  Moreover, traditional “boy” and “girl” toys are spatially integrated so as to obliterate any value systems associated with stereotypical gender preferences.  For those interested, here is the article.

Bullying has not ceased in spite of a laudable movement to curb it.  Although Laxton and Cooper’s hearts may be in the right place, they have influence only over Sasha’s worldview and not that of other children (who get theirs from their own parents or guardians).  Are they putting Sasha at risk, as Dr. Eugene Beresin claims?  And if the answer is yes, are they entitled to make such choices for Sasha if they lead to increased risk of bullying, which could potentially be developmentally as well as physically harmful?

Ugliness as a disability?

A bit of an oldie, but interesting nonetheless: Economist Daniel S. Hamermesh, author of Beauty Pays, makes the argument in an Op-Ed for the New York Times that ugliness should be considered as a form of disability, with compensation available to the very ugliest people of society.  He makes the case that being ugly results in significant social impairment; that is, the ugliest people tend to make less money and be less successful due, primarily, to their looks. As a result, people should either be compensated, or legislation should be put in place which, in effect, would represent affirmative action for the ugliest people of society.

Economic arguments for protecting the ugly are as strong as those for protecting some groups currently covered by legislation. So why not go ahead and expand protection to the looks-challenged? There’s one legitimate concern. With increasingly tight limits on government resources, expanding rights to yet another protected group would reduce protection for groups that have commanded our legislative and other attention for over 50 years.

Is ugliness really a disability? If it is, what does this mean about the concept “disability”? Is it primarily a social construction — a result of social stigma?

Defining Autism

The New York Times recently published an article on the medical debate over the definition of autism — whether it has been defined too loosely, and needs to be narrowed. The article  explores some of the potential consequences that the outcome of this debate could have, and looks to the anger and fear that has been generated amongst many parents with children currently defined as autistic. Amy Harmon writes,

A study reported on Thursday found that proposed revisions to theAmerican Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.

Some parents fear that children deemed “on the edge” of autism will have their treatment options limited with the proposed narrowing of the definition. In contrast, some parents with severely autistic children support narrowing the definition.

“Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected,” said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on hisblog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.

The article goes on to discuss the implications that labelling a child with ‘autism’ has on that child. On the one hand, it often opens up the opportunity for treatment, while on the other, the child is deemed abnormal.

Tomorrow’s Children

Some might be interested in the film Tomorrow’s Children (called ‘The Unborn’ in Britain) which was released in 1934, and can be downloaded free of charge at the Internet Archive. It offers a commentary on the American Eugenics movement prior to the horrors of Nazi eugenic policy which was introduced later in the decade. IMDB provides a brief synopsis:

A young woman wishes to marry her boyfriend and raise a family, but because her own family has been deemed “defective” by the state health authorities–her parents are lazy alcoholics who continue to have children, and her siblings(brothers here) are crippled, have mental problems or are jailed–she is ordered by a court to undergo sterilization so that her family’s “defective genes” won’t be passed on to any more children. Her boyfriend and a kindly priest desperately search for a way to stop the forced sterilization before it’s too late.

Has anyone had a chance to see this movie? Also, thanks to Velvet Martin for the heads up.

Non-consenting human subjects: victims of eugenics?

Non-Consenting Adults

Student Summer Work Opportunities

Student Summer Work Opportunities:

Flexible Hours (30-40 hours per week)
Wages range between $9.00-11.00 per hour
Possibility of holding a second job due to hour flexibility
Students can work from anywhere in Canada as work will be done by telecommuting

Job Description(s):
Editing and internet support
Potential composition of published articles and/or books (with possibility of co-authorship)
Typing and editing large manuscripts
Help for graphic design for covers
Also looking to fill one internet position

Applicants must be full time students.

Please contact Dr. Austin Mardon at aamardon@yahoo.ca

Kidney Transplant Denied

The parents of a young girl with Wolf-Hirschorn syndrome claim that she was denied a kidney transplant solely on the basis of her intellectual disability at the Children’s Hospital of Philadelphia. The mother’s account of her interaction with the social worker and physician is very specific. There seems to be little room to conclude maybe there was some other reason for the denial. Medical Ethicist Art Kaplan’s poll goes right to the heart of this. While Kaplan concludes, “But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases,” the poll on the page asks simply, “Do you think a mental disability is a valid reason to deny a transplant?” If you have an opinion consider responding to the poll.

Anderson Cooper 360 segment on forced sterilization

On December 27, Anderson Cooper 360 had a segment dedicated to the history of forced sterilization in the United States. Click through to watch the video.

Conference Call for Papers: Human & Machine: Posthumanism in Technology, Culture, and the Arts

This might be of interest to some people:

The Ewha Trans-Humanities Research Team will host an international
conference on “Human & Machine: Posthumanism in Technology, Culture
and the Arts” from June 1st to 2nd, 2012 and invites suitable
contributions for presentation at the conference..

Genetic engineering and digital technology are more than just
supplement of human intellectual and physical ability; they seem to
bring fundamental changes to the nature of what it means to be human.
Such changes have been seen in how philosophy, literature, art,
technology and cultural discourse view the issue of individual and
group identities, the nature of human characteristics, the meaning of
life, the status of humans in nature and other relevant issues taken
from ethical and political perspectives. In this conference, the
subject of humans and technology, both of which are represented in the
debate on posthumanism, will be deeply discussed from a
multidisciplinary perspective focusing on the topics of: Human Body
Transformation in Science, Technology, and Art; Ethical Issues on
Human Enhancement; Representations of Posthumans in Popular Culture;
and Posthumanistic Impact on Human Ontology.

The conference poses the question as to whether or not technology has
influenced the perspective of being human and the nature of humanity
itself. The conference examine the aspects of the human body that have
been transformed through technology and their significance: How have
physical transformations through prostheses, implants, genetic
engineering, and organ transplants influenced human identity? How are
the ethical issues, that such transformations generate, demonstrated
in the arts? Given the phenomenon that human beings can reconstruct
themselves with machines as well as utilize machines, what is the
meaning of post-human embedded within the interaction between
human-like robots and human beings, or the combination of technology
and human-beings? These questions are to be discussed in the
conference.

Human enhancement and transformation technology, which cutting edge
technology will make possible, demand our serious consideration since
the diverse aspects of being human in the future rely on a variety of
ethical and political issues including the rationality and validity of
the application of such technologies. The conference endeavors to find
answers to the fundamental questions of how to define what is the norm
in the nature of being human, and what natural rights for human beings
are, followed by which values are to be respected in the era of
cutting edge technology.

Furthermore, the conference examines aspects of representations of
posthumans like human clones, androids, cyborgs and aliens which
depict new forms of human beings, through the image of the future
presented in popular culture such as SF movies, animations, SF novels,
music videos and TV commercials. And also, there will be a discussion
of public awareness on the notions of naturalness, otherness, class,
utopia and dystopia related with such popular culture.
As human beings attain the ability and skill to reconstruct their
bodies through substitution, the boundaries between the human body and
its image, the lines between what is artificial and what is natural,
and the distinctions between nature and culture disappear. This
phenomenon raises various ontological issues regarding the
relationships of the real body and the virtual body, life and
lifelessness, and the subject and its surroundings or ‘others’.
Posthumanism pursues, on one hand, a liberal and post-ideological
relativism, but on the other hand, it tends to combine with the
critical theories, materialism and feminism. How can individual
transhumans and posthumans be positioned in social systems and
relations? Indeed, do human beings have the freedom to choose a body
for themselves? If so, how and where can we apply our enhanced
abilities? To what extent can it be considered an individual matter or
a social and political matter? Through posing the issues and problems
on modern anthropocentricism, this conference reconsiders the human
ontology that is constantly changing and being reconstructed rather
than the one that is defined by identity in the nature of
transcendental property.

A tentative schedule of the conference is as follows:

June 1st
Session 1: Human Body Transformation in Science, Technology, and Art
Session 2: Ethical Issues on Human Enhancement
Roundtable Discussions: all speakers and discussants will participate in

June 2nd
Session 3: Representations of Posthumans in Popular Culture
Session 4: Posthumanistic Impact on Human Ontology
Roundtable Discussions: all speakers and discussants will participate in

Confirmed Speakers include Julian Savulescu (Oxford University), Dónal
O’Mathúna (Dublin City University), Michael Hauskeller (University of
Exeter), Thomas Philbeck (NYIT), Stefan Sorgner (Universität
Erlangen-Nürnberg),  and Jens Eder (Johannes Gutenberg University,
Mainz).

If you like to present a paper at the conference, please submit an
abstract of not more than 400 words by 29 February 2012 to Dr.
Eunryung Kim, e-mail: elysak@ewha.ac.kr.

New York Times: “Thousands Sterilized, a State Weighs Restitution.”

Those interested in the history of eugenics and the more recent issue of restitution will want to see the New York Times article on the sterilization program in North Carolina.

Now, along with scores of others selected for state sterilization — among them uneducated young girls who had been raped by older men, poor teenagers from large families, people with epilepsy and those deemed to be too “feeble-minded” to raise children — Mr. Holt is waiting to see what a state that had one of the country’s most aggressive eugenics programs will decide his fertility was worth.

Although North Carolina officially apologized in 2002 and legislators have pressed to compensate victims before, a task force appointed by Gov. Bev Perdue is again wrestling with the state’s obligation to the estimated 7,600 victims of its eugenics program.

The recommendations for compensation by the task force appointed by Gov. Perdue could be influential for other states, thirty-one of which had eugenic programs in place.

CMAJ: Line between acts and omissions blurred, euthanasia critics argue

CMAJ: Line between acts and omissions blurred, euthanasia critics argue.

The Collective Memory Project

This fall we were lucky enough to have The Collective Memory project on display at Enterprise Square in Edmonton, Alberta. The show was the product of Living Archives on Eugenics in Western Canada’s 2011 intern program, with Anne Pasek operating as curator. The display was described as,

Part art exhibition, part grassroots organizing, the project attempts to bring together academics, activists, artists and community members in acts of remembrance for a history in danger of fading from view. It is by rooting our perspectives in a memory of the past that we sill become better equipped to foresee the challenges of the future. Drawing from Rob WIlson’s definition of collective memory as a cognitive metaphor that crystallizes agency, The Collective Memory Project seeks to engage its public in an exercise of memory as a political act.

The display looked to explore themes of institutionalization, remembrance, and affect, whether in the feeling of alienation and judgment or the emotional pain associated with disability and cognitively different children. Unfortunately the show ends today, but you can check out photos of some of the artwork taken during the launch in October.

End of life report of Royal Society of Canada Expert Panel

http://www.rsc-src.ca/documents/RSCEndofLifeReport2011_EN_Formatted_FINAL.pdf

Here a few quotes related to us

“We discussed in considerable detail the arguments against assisted suicide. The evidence does
not support claims that decriminalizing voluntary euthanasia and assisted suicide poses a threat
to vulnerable people, or that decriminalization will lead us down a slippery slope from assisted
suicide and voluntary euthanasia to non-voluntary or involuntary euthanasia. “

Also note their definitions. It makes the proposal goes far beyond what is legal in Oregon and Washington eliminating terminal as a boundary

““Voluntary Euthanasia” is an act undertaken by one person to kill another person whose
life is no longer worth living to them in accordance with the wishes of that person.”
“End of life can be understood as a continuum of events starting with the diagnosis of one or more
serious illnesses or injury”

“The Panel recommends against using “terminal illness” as a prerequisite for requesting
assistance. The term is too vague and would leave the statute or policy open to a Charter
challenge. There is no precise science to providing a prognosis of a terminal illness in terms  specific length of time. Health care providers cannot be accurate enough, and if the statute or
policy does not include a time restriction then the condition “terminal illness” becomes too
broad. For example, a person with Guillain-Barré syndrome will die from her disease, but lives
in the average three years after diagnosis. Further, if the term “terminal illness” is made a
necessary condition in the statute, then it would be under-inclusive; there are many individuals
whose lives are no longer worth living to them who have not been diagnosed with a terminal
illness. They may be suffering greatly and permanently, but are not imminently dying. There is
no principled basis for excluding them from assisted suicide or voluntary euthanasia”

Cheers
Gregor

Leilani Muir interview on The Current

For those that missed it, Leilani Muir was interviewed last week on CBC’s The Current about her experiences in Red Deer’s Provincial Training Centre and her forced sterilization. You can listen to the interview here. CBC gives the following preview:

She was little girl unloved and unsuspecting when her parents drove her up the hill in Red Deer Alberta. It was a moment that would forever change Leilani Muir’s life, abandoned to people zealously experimenting with eugenics. What they would do to her would result in anguish and eventually lawsuits . Today, Leilani Muir, now in her 60s is ready to tell her story.

A followup to the interview in the form of listener responses and an interview with Heather Pringle, Canadian non-fiction author and journalist, can be found here. Listener responses include the stories of those who worked at the Provincial Training Centre. Another listener questions who, precisely, should be blamed for Leilani’s treatment, arguing that Leilani’s mother is ultimately the one most responsible.

Mental Illness and Leadership?

Below is a link to controversial interview in Maclean’s Magazine with Nassir Ghaemi about his new book A First-Rate Madness: Uncovering the Links Between Leadership and Mental Health.

http://www2.macleans.ca/2011/08/09/the-benefits-of-mental-illness-and-why-perfectly-normal-leaders-are-the-wrong-people-for-a-crisis/

Here we go again… population panic and the blame game

Last month the United Nations announced that we’ve arrived at a human population of more than 7 billion people, sounding a call for alarm to provide targeted reproductive services for the 215 women worldwide that do not have access to reproductive services, according the UN Population Fund.

 Population panic is not new. In the early 19^th century, Anglican clergyman Thomas Malthus claimed that the dangers of population growth would put human civilization in jeopardy. Malthus did not support keeping the poor alive through charitable means and protested the Poor Laws of the time, which provided food aid and support for poor citizens and set the groundwork for the modern welfare state. Despite the fact that Malthusian population theory was proven to be erroneous- his work has been tremendously influential, most importantly, in evolutionary biology. In 1968, Paul Ehrlich’s bestselling book ‘The Population Bomb’ once again raised alarmist, doomsday predictions about the danger of population growth causing crises of apocalyptic proportions.  His predictions were also inaccurate.

 There is no question that we are facing a wide range of environmental and financial crises and far too many women lack access and choice in reproductive medicine. However, in the face of doomsday fears of scarcity, targeted population control of specific groups based on class, medical status, race and other social determinants has been a troubling historical trend. The question is not ‘if’ population is a problem; but ‘who’ gets targeted in population control programs.  Since the 1920s, targeted and eugenic population control in marginalized populations has been present across North and South America, Australia, the Middle East and Europe.  Anecdotally, we can estimate it to be happening, or have happened all over the world. This past summer at the 9^th Annual Conference in Ethics in Development in Pennsylvania, a medical researcher from Nigeria approached me following presentation of my paper on sterilization in the Americas, to say that forced sterilization surgery in tribal communities in South and Western Africa has been happening for many years and went on to describe a personal account. Belief that these incidents of reproductive abuse represent collateral damage in the more pressing fight for contraception access has cloaked the deeper Malthusian ideology that lives who cannot provide for themselves are ‘fertility liabilities’.

 The Reuters humanitarian news service, Alertnet, recently quoted Parvinder Singh, of ActionAid India on the relationship between fears of scarcity and population: “the issue of population cannot be seen divorced from the aspect of resource or energy footprint,” However, Singh continued to note that: “the largest drain continues to be in the West which have traditionally consumed, and continue to, massive volumes of resources because of a life-style and purchasing power that far exceeds that of so-called high population poorer countries.” Research has demonstrated that raising quality of life for women and their families leads to a drop in fertility- so much so that the world’s richest countries are fearing a further ‘drop’ in their national populations. The recent US recession has created a record low in fertility, leading to fears that there will be ‘not enough’ children born to sustain the national economy. So, not enough of one group- but too many of another? On what basis are these determinations made? On relative value to the economy?

 If we are to make progress against this historical trend of using population panic to make authoritarian determinations over which lives have value for reproduction, we have to own up to the pervasive Malthusian ideology that views fertility in the developed world as a valuable resource and developing world fertility as a global liability

Wellcome Library: Papers of the Eugenics Society to be Digitised

Wellcome Library: Papers of the Eugenics Society to be Digitised.

Can we protect the privacy of research subjects without blocking access to information?

Several members of the Living Archives on Eugenics in Western Canada project have experienced some of the problems of attempting to get access to personal information from government institutions that create barriers to, or outright denials of, access to information by  citing the need to protect the privacy of individuals to whom the information relates. All privacy legislation in Canada, whether federal or provincial, defines “personal information” as being information about an identifiable individual. There are many simple ways to alter records containing personal information, depending on the type of record and type of information, and this can and should be negotiated with researchers, many of whom have already factored privacy protections into their research as part of the ethics approval process.

An interesting piece in last week’s New York Times focused on just these issues, although in the US. New rules affecting researchers dealing with sensitive medical information will offer the necessary privacy protections to subjects who participate in studies or whose information is otherwise made available to researchers. At the same time, researchers are concerned that the new rules will result in limited access to various types of valuable data, such as census data, marketing research, and various types of statistics. Typically, denials of access to such information are based on the premise that even when personal identifiers are removed from the information, individuals can potentially be identified by matching data obtained from other sources. While this may certainly be a legitimate issue, common sense should prevail when dealing with aggregate data, or with historical documents. Unfortunately, in Canada and the US alike, common sense doesn’t always factor into decision making, since denying researchers access to information is often the result of risk management by the institution holding the information, not wanting to be held liable for making mistakes. Usually, the best approach is to draft a research agreement between the researchers and the institution, shifting the responsibility for protecting privacy from the institution to the researchers. However, this depends entirely on the willingness of institutions to assist researchers in the first place. If they are not willing to assist in this way, it may be up to researchers to resort to using standard access to information processes to obtain information for research purposes.

It is in this context that we should remember that access to information and protection of privacy go hand in hand, and both aspects should be considered together. Information relating to identifiable individuals belongs to those individuals, but information that is not identifiable belongs to the citizens, not to the government. And researchers are finding increasingly innovative ways to utilize information and transform it into new types of data that can be used to provide better government services, all with little to no risk of breaching anyone’s privacy when done properly. Institutions should be trying to find more innovate ways of getting such data into the hand of researchers, instead of creating unnecessary roadblocks.