How an IRB Could Have Legitimately Approved the Facebook Experiment—and Why that May Be a Good Thing

by Michelle N. Meyer, Assistant Professor and Director of Bioethics Policy

By now, most of you have probably heard—perhaps via your Facebook feed itself—that for one week in January of 2012, Facebook altered the algorithms it uses to determine which status updates appeared in the News Feed of 689,003 randomly-selected users (about 1 of every 2500 Facebook users). The results of this study—conducted by Adam Kramer of Facebook, Jamie Guillory of the University of California, San Francisco, and Jeffrey Hancock of Cornell—were just published in the Proceedings of the National Academy of Sciences (PNAS).

Although some have defended the study, most have criticized it as unethical, primarily because the closest that these 689,003 users came to giving voluntary, informed consent to participate was when they—and the rest of us—created a Facebook account and thereby agreed to Facebook’s Data Use Policy, which in its current iteration warns users that Facebook “may use the information we receive about you . . . for internal operations, including troubleshooting, data analysis, testing, research and service improvement.”

Some of the discussion has reflected quite a bit of misunderstanding about the applicability of federal research regulations and IRB review to various kinds of actors, about when informed consent is and isn’t required under those regulations, and about what the study itself entailed. In this post, after going over the details of the study, I explain (more or less in order):

  • How the federal regulations define “human subjects research” (HSR)
  • Why HSR conducted and funded solely by an entity like Facebook is not subject to the federal regulations
  • Why HSR conducted by academics at some institutions (like Cornell and UCSF) may be subject to IRB review, even when that research is not federally funded
  • Why involvement in the Facebook study by two academics nevertheless probably did not trigger Cornell’s and UCSF’s requirements of IRB review
  • Why an IRB—had one reviewed the study—might plausibly have approved the study with reduced (though not waived) informed consent requirements
  • And why we should think twice before holding academics to a higher standard than corporations

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You Can’t Fix What Ain’t Broke: Combating the Dangers of Reparative Therapy

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Earlier this week, the New York State Assembly overwhelmingly voted to pass a bill that would ban the use of so-called “reparative” or “conversion” therapy – treatments that aim to change sexual orientation – on minors. During the time I wrote this commentary, the New York State Senate had yet to vote on the bill. They have until the end of today, when the 2013-14 legislative session officially closes, to pass the bill. Should it pass, Governor Cuomo is expected to sign the bill into law. This would make New York the third state – following California and New Jersey – to outlaw efforts to turn gay kids straight.

Over 250 organizations around the country currently offer reparative therapy to adults and to minors. Many insurance plans, including Medicaid, also cover the costs of mental health counseling and treatment for homosexuality. This is despite the lack of evidence that conversion therapy works.

Most of the scientific studies conducted to date show that conversion therapy is ineffectual and even harmful. In 2009, for example, the American Psychological Association’s Task Force on Appropriate Therapeutic Responses to Sexual Orientation conducted a comprehensive review of all available research on reparative therapy. That group concluded that a person’s sexual orientation could not be changed. While some people are able to change their sexual behaviors —by becoming celibate rather than having a relationship with a partner of the same gender — their physical and emotional attraction to members of the same sex remained. Other professional organizations, including the American Psychiatric Association, the American Counseling Association and the National Association of Social Workers have reached similar conclusions about the efficacy of reparative therapy.

Of the few studies that actually suggest that conversion therapy works, most are fundamentally flawed. For example, there is the oft-quoted study from famed psychiatrist Dr. Robert Spitzer. That study, which interviewed a small group of gay men and women about their sexual feelings and behaviors before and after reparative therapy, concluded that, “some people can change from gay to straight.”

But participants in that study were recruited through groups like the National Association for Research and Therapy of Homosexuality (NARTH), an organization that actively promotes the use of reparative therapy. Most of the participants described themselves as deeply religious, and many were politically active ex-gay advocates. The results of that study are thus heavily biased. Dr. Spitzer himself retracted this study in 2012, stating that he “owed the gay community an apology”. Nevertheless, this study is still cited by NARTH and other anti-gay organizations as conclusive proof that homosexuality is a malleable lifestyle choice rather than an immutable biological fact.

Being gay is not an illness, and it doesn’t need to be treated through therapy. What should be treated is the erroneous belief that people can (and need) to be cured of their homosexuality. When a group like the Texas Republican Party adopts a platform that, “recognize[s] the legitimacy and efficacy of counseling, which offers reparative therapy and treatment for those patients seeking healing and wholeness from their homosexual lifestyle,” they demonstrate their ignorance of facts.

Opponents of legislation that bans reparative therapy, such as Cathie Adams, president of the conservative Texas Eagle Forum, like to describe this as an issue of freedom. Ms. Adams spearheaded the effort to get Texan Republicans to endorse reparative therapy because she does not think that, ”homosexuals are born as homosexuals.” She believes that gay men and women should have the right to seek out reparative therapy and thus be rescued from an immoral lifestyle choice.

What folks like Cathie Adams fail to understand, however, is that endorsing conversion therapy doesn’t promote freedom. Rather, it does the exact opposite. It allows (and even encourages) parents to force risky and unnecessary treatment on children and teens that they see as “sick”. It also reinforces dangerous but socially accepted stereotypes that gay men and women are mentally ill or physically diseased, and thus contributes to the continued and destructive stigmatization of sexual minorities in the US.

Such stigmatization and discrimination is why gay men and women are more likely to be the victims of harassment, bullying and violence. It is also why they have higher rates of anxiety, depression, substance abuse and suicide. This is particularly true of gay men and women who undergo reparative therapy, which explains why groups like the American Psychiatric Association and American Psychological Association openly condemn attempts to change an individual’s sexual orientation.

Quite simply, reparative therapy is wrong and should be banned. It should be banned for everyone, not just for teenagers as California, New Jersey and (hopefully) New York have done.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 19, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Living With HIV/AIDS Should Not Be A Crime

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

It went largely unnoticed by the public and the press, but last month Iowa’s Senate and House of Representatives did something groundbreaking. With broad bipartisan support, that state became the first in the country to repeal and replace its existing HIV criminalization law.

Prior to this repeal, Iowa was one of 34 states to have a law that explicitly criminalized exposing an uninfected individual to HIV through sex, shared needles or other routes of transmission. Those of us who reside in the Northeast — particularly those living with HIV/AIDS — are fortunate in that the states in this region of the US do not criminalize HIV. Others are not so lucky.

States such as Iowa, Michigan and Texas passed these criminalization laws in response to the 1990 Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. That Act, which proved public funds for treatment and care of those living with HIV/AIDS, also required each state to certify that it had laws that could be used prosecute those who knowingly exposed others to HIV.

The states already had adequate criminal laws to prosecute the malicious transmission of HIV, usually through existing assault statutes. Despite this, in accordance with the requirements of the Ryan White CARE Act and in response to several high-profile transmission cases (including the 1996 incident when Nushawn Williams was charged with intentionally infecting 13 women and girls with HIV in New York), legislators were quick to pass laws that explicitly focused on persons living with HIV/AIDS.

Twenty-four states, for example, passed legislation that required people with HIV to notify their sexual partners of their serostatus. Fourteen states also passed laws requiring disclosure of HIV status to needle-sharing partners. Other states also make it a crime for an HIV infected person to spit or to touch another person with their blood or saliva.

Until last month, Iowa had one of the strictest laws on the books. Iowans living with HIV/AIDS faced up to 25 years in prison and inclusion on the state’s sex offender registry if they could not prove that they had disclosed their HIV status to a sexual partner. This was true even if they practiced safer sex and even if that person remained uninfected.

Moreover, the burden of proof was on the accused. Iowans living with HIV/AIDS were ‘guilty until proven innocent,’ as persons charged with violating the transmission statute had to show that they disclosed their status to the sexual partner rather than the other way around.

Thankfully, that law has been replaced. Iowa’s new statute takes into account such important factors as whether or not safer sex precautions were used, whether or not transmission of the virus actually occurred, and whether or not the person intended to transmit HIV. The names of those convicted under the old law have also been expunged from the sex offender registry.

Hopefully, the 33 other states that still have HIV criminalization laws will soon follow suit. This is because such criminalization statutes do little to prevent the spread of HIV. In fact, they may even exacerbate the very problem they were intended to prevent.

Currently, the only successful defense to prosecution under most HIV criminalization statutes is either a claim of disclosure (often hard to prove given the one-on-one nature of most sexual encounters) or ignorance of one’s HIV-positive status. Seeking voluntary HIV testing can make a person criminally liable for normally legal conduct: consensual sexual activity. This not only adds to the still rampant discrimination and stigmatization of those living with HIV/AIDS, but also discourages at-risk individuals from seeking testing because of fears of legal prosecution.

Those who know they are HIV-infected become legally obliged to disclose their HIV status to long-time, casual and even anonymous sexual partners. By contrast, people who frequently engage in unsafe sexual encounters but who do not know that they are HIV infected — even if they have a strong reason to assume so, based on behavior — are under no legal obligation to disclose this information to a sexual partner.

There can be no doubt that is a deterrent to HIV testing. Many at risk-individuals may be discouraged from seeking HIV testing because of fears of legal prosecution, despite the fact that testing and treatment could not only preserve the lives of those with HIV but also reduce the likelihood that they will transmit the virus to others.

We know, for example, that treatment of those living with HIV/AIDS is as effective in terms of reducing the risk of HIV transmission as using condoms. New antiretroviral drugs can essentially render a person non-infectious, but that can only achieved if people seek testing and treatment. HIV criminalization laws discourage this.

This is not to say that particularly egregious, intentional and malicious cases of HIV transmission shouldn’t be prosecuted, but existing criminal assault laws cover that. But it is unreasonable to continue to require HIV-infected people to disclosure their serostatus to sexual partners if they have undertaken the necessary precautions — practicing safer sex and seeking treatment — that makes transmission exceedingly unlikely.

It is ironic that these criminalization laws actually encourage the very act that they were designed to prevent: the wanton and callous spread of HIV.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 5, 2014, and is available on the WAMC website. Portions are also adapted from an article written by Drs. Udo Schüklenk and ean Philpott-Jones and published in the August 2011 Issue of the International Journal of Law in Context. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Justina Pelletier’s Less-Than-Sweet 16

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Justina Pelletier turned 16 over Memorial Day weekend.  She was only 14 when the Massachusetts Department of Children and Families (MA DCF) took custody of her.  She has been hospitalized or institutionalized ever since.  Many of you will be aware that this is a story I have been following closely. If you are new to this tale and need further background on this family please see When Being Wrong is Unacceptable and When Doctors Disagree.

Earlier this month Justina Pelletier was transferred to a facility in Connecticut.  Though her parents still feel she should be home, they have said that this new facility seems to be taking better care of their daughter.  They are allowed more frequent visitation with her and are hopeful that she will soon be home.  Some friends were even allowed to visit and celebrate with her on her birthday.

Even though these are positive developments, the case as a whole is still very concerning.

In March of this year “permanent” custody of Justina Pelletier was awarded to the state of Massachusetts.  Prior to this, Justina’s care was ordered back to her original physicians at Tufts.  Since this case is a diagnostic dispute between the physicians at Boston Children’s Hospital (BCH) and Tufts, wouldn’t this transfer signify that the Tufts diagnosis of Mitochondrial Disorder was being upheld?  And, since the parents had been upheld on which doctors should treat their daughter, why did custody go to the state?  The logic in these decisions is not clear to me.

Shortly after the custody ruling in March the judge’s decision was leaked, trying to gain some additional perspective on the case I of course read it.  The full text can be found here.  My interpretation is as follows:

He made three main points:

  1. Disappointment that Connecticut Department of Children and Families (CT DCF) was unwilling to accept a transfer.
  2. Justina’s diagnosis
  3. Parental bad behavior

Let’s break down what Judge Johnston had to say about each of these issues.

First, the better part of his decision talked about his disappointment in CT DCF for refusing to accept a transfer of Justina.  He noted in his decision that CT DCF had investigated the Pelletiers and found that the home was an unsuitable environment for Justina (the Pelletier family claims the opposite).  Personally, I found the incessant mention of the CT DCF denial by Johnston to be (for lack of a better word) whiny to the point of ridiculousness and redundancy.  To be frank, I expect legal documents to be more professional and less petulant.

However, all that being said, I don’t understand why Connecticut is refusing the transfer.  I assume it is to avoid media attention and responsibility.  If they were to accept her, she would be closer to home and if (as the Pelletier family states) CT DCF in fact found no problem with the home, why not accept the transfer and release her to the custody of her parents?

Regarding the diagnosis, Judge Johnston states that there is a large amount of psychological and medical evidence to prove that Justina suffers from Somatoform disorder.  However, as mentioned above, his order to transfer her care back to her original physicians at Tufts is contradictory to this statement.  The Tufts physicians diagnosed Justina with Mitochondrial Disorder and will certainly treat her in accordance with their diagnosis.

The last belabored point in the decision, was a discussion of the parents’ poor behavior.  Interestingly, everything noted as poor behavior and the reasoning for removal of custody happened after Justina was initially placed in state custody.  The document states that the Pelletiers were:

  • Verbally abusive to BCH staff
  • Approaching other families at BCH and telling them that the hospital was kidnapping children
  • Threatening institutions that were planning to accept Justina as a patient
  • Contacting the media
  • Changing their minds about accepting a transfer to CT DCF upon the advice of new legal counsel.

To me, much of this seems like behavior that is par for the course when someone has been unnecessarily stripped of their parental rights and are grasping at straws to have their child returned.  I don’t deny that the behavior is rude, but being rude is not a reason to lose your parental rights.

Consider these parents: their daughter has been taken by the state of Massachusetts, they are extraordinarily limited in when they visit her and what can be discussed, they see her health declining and can do absolutely nothing to help her.  How calm and pleasant would you be if it were your child?

The bottom line is: judgment on whether or not a home is fit for a child should be based on facts about the home life.  Rude or uncivil behavior by the parents after custody has been removed from them is irrelevant and should be expected from any loving parent, as much as we would expect a mother bear to attack if she felt her cubs were threatened.

I am disappointed at the lack of consistency and logic I see in the decisions made by Judge Johnston.  If any of my more legally minded readers can shed light on this for the rest of us I welcome your insight, please leave a comment below.  As always, I will continue to watch and write about this case.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on May 31, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]