Mar 252014
 
 March 25, 2014  Featured News, Youth & Schools

Over the last 30 years, I’ve spent a lot of time grappling with the thorny question of when is it okay to share a child’s sensitive information in a public forum or setting. Two videos recently posted online that included such disclosures got me thinking about this issue again.

So let me start with some questions:

Is it ever acceptable for a parent to disclose their minor child’s sensitive information in a public setting? If so, under what conditions would you find it acceptable and under what conditions do you find it unacceptable?
Does a parent need the child’s informed consent before sharing that information, or should they at least try to obtain it? And if you think consent is needed or should at least be requested, at what age should the child be asked? 
At what age or level of developmental functioning can a minor child give truly informed consent to the disclosure of their sensitive information to the public? 
Is what would be a privacy breach if disclosed by others acceptable if the source of the disclosure is the parent?

As a parent, a healthcare professional who treats children, and as a pro bono special education advocate for students with disabilities, I know these are complex legal, ethical, and developmental questions. For example,  as a healthcare professional, I occasionally present at conferences. I also author books. In those mediums, I may want to share clinical cases that make particular points or are likely to have an emotional impact on attendees or readers. Even if I am not naming my patients, if their cases are unusual, there is a risk that the parent – or child when they are older – might recognize themselves or that someone else who knows them may recognize them. Under such circumstances, I routinely request permission from both the child and their parents to use some of their experiences to help educate others and even obtain written releases that are revocable.

But what if the children whose stories I want to share to educate others are my own children? Do I need my children’s consent to share some of their experiences with conference attendees? Do I need their consent to write about them in my books? And if not, why do my own children deserve less protection and have fewer rights than my patients?  You might think the answer lies in the context in which I obtained the information – that I have a legal and ethical duty of confidentiality to patients and that I have no such duty to my children? But is there really no parental ethical duty?

In actuality, I have shared some of my children’s experiences in the hopes of educating others and I did ask them for their permission first. But my books are now “out there,” and at some point, will my children regret that their mother exposed how impaired they were when they were younger? I hope they won’t, but consider the negative feedback author Julie Myerson got when she wrote her story about her son’s struggle with addiction, and how he reacted. That case is complicated by allegations that he initially consented and then withdrew consent, but look at the damage to the relationship.

Did Myerson’s purpose in writing her book matter? Is there some “greater good” that would justify exposing her son’s private details publicly if there was no other way to tell her story (although in her case, one wonders why the book wasn’t written under a pseudonym)? Does it matter if the child first consents, then withdraws consent? And does it matter that digital footprints created by such disclosures may cause problems for the child later in life?

In the past few months, some parents have come forward to tell their children’s stories in the hopes of persuading state legislatures to not contract with inBloom or other services that would entail sharing their children’s personal and sensitive information with third party vendors. Their concerns are very understandable to this parent and privacy advocate. In the process of trying to advocate for the protection of their children’s private information, however, they revealed some of the very types of information they argue should be kept private.

Is that a contradiction or hypocrisy? Not in my opinion, although student privacy advocate Sheila Kaplan (@EducationNY) has strongly argued such disclosures are antithetical to parents protecting their children’s privacy and that others should not promote or disseminate videos or materials in which parents have disclosed their children’s sensitive and personal information. She is not alone in her views, although others firmly disagree.

Personally, I would not condemn these parents at all, but I do hope parents think twice – or three times – or four times – about whether they can make their point without disclosing personal and/or sensitive information about their children. Can we argue for protecting children’s privacy without specifically revealing that our child has ADHD and sees a psychiatrist? I think we can. We can say, “My child has neurological challenges and sees a doctor whose reports are part of my child’s education records. I’m concerned that these records are being shared with third party vendors whose names I don’t even know and who might at some point, have a data security breach.”

Can we argue against Common Core State Standards without specifically revealing that our child has experienced suicidal thoughts from the stress of school? Sure, although in that case I think that kind of specificity about the impact of the state’s policies is more likely to be effective with state legislators. Even then, though, I suppose it might be preferable to say something more generic like, “My child – who used to enjoy school and do well – is now failing. He has become depressed and has total meltdowns at home because of these new policies. The state is seriously harming our children in the name of improving outcomes, and it must stop.”

To reiterate: I am not blaming the parents for what they did say. I think I understand – and appreciate – their very noble intentions. I would just urge all parents – myself included- to give this issue more thought and caution in a digital world where future discrimination lurks around every corner.

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