In June of 2025, Secretary of Health and Human Services Robert F. Kennedy, Jr. told a legislative committee that his agency would be working towards a goal of every American wearing a device tracking information about the wearer’s body and health within four years.
One assumption underlying RFK Jr.’s campaign is that more information is always helpful – but what if the health information you learn warns of elevated risks that you can do nothing to prevent? Even further, what if you never asked for the information at all? In Poked, Prodded, and Privacy: Parents, Children, and Pediatric Genetic Testing, Allison M. Whelan incisively explores these questions in the context of genetic testing, explaining multiple ways that the privacy rights of children can be violated if their parents consent to genetic testing on their behalf. Professor Whelan’s analysis also illuminates broader dilemmas about the rights of children and authority of parents playing out in multiple troubling ways, including denials of gender affirming care to transgender youth.
It has never been easier to get medical information about yourself, whether it is through the “wearables” HHS will apparently be advertising or genetic testing that can help to identify future health risks. Professor Whelan begins her article with a well-known example of genetic testing that can alert the patient to future risks they may be able to avoid: Angelina Jolie’s genetic testing that revealed a genetic mutation indicating an extremely high risk that she would someday develop breast or ovarian cancer. In response, over the next few years Jolie had a preventative double mastectomy and hysterectomy. Jolie, who had already lost her mother and other close female relatives to breast and ovarian cancer, understood the significance of her test results and was able to take action in response.
Professor Whelan focuses, however, on patients in a very different position: children who undergo pediatric predisposition genetic testing (PPGT) revealing information that they cannot act on in childhood. Such testing indicates one of two things. First, a child has a genetic mutation that means they are certain to or are at a much higher risk of developing an adult-onset disease with no means of prevention or treatment. Professor Whelan uses Huntington’s disease as an example: genetic testing reveals whether a person carries the single genetic abnormality that causes the disease. There is currently no treatment that prevents or slows the progression of Huntington’s, only some treatment that may lessen the severity of symptoms once they appear. Second, PPGT could reveal a risk (but not a certainty) that the patient may develop an adult-onset disease that has treatment options, such as Jolie’s greater cancer risk. Parents consenting to such testing may hope that having information early means that their child will take preventative measures like Jolie’s mastectomy very early in adulthood, hope that other health choices in childhood might delay the onset of a disease, or simply believe that knowing risks earlier would allow their child to mentally and emotionally prepare for future health changes. But the information drawn from PPGT that Professor Whelan focuses on does not indicate any medical treatments or specific behaviors that the parents would direct while their child was still a minor.
The center of Professor Whelan’s concern is the pediatric aspect. Although it is routine for parents to consent to medical care for children, PPGT has extremely limited utility and significant risk, particularly to the privacy rights of the child, including rights against compelled disclosure of private information, unreasonable search and seizure, and bodily autonomy. The right of parents to direct the care of children has been vindicated in a number of Supreme Court cases, as Professor Whelan traces. Furthermore, she highlights that particularly in early cases, the Court largely dismissed any rights held by the child in favor of focusing on the conflict between the parent’s authority and the state’s justification in intervening on behalf of the child. In a few limited contexts, however, the Court has at least hinted at the child’s interests. In Elk Grove Unified School District v. Newdow, for example, the Supreme Court noted that a student whose father objected to her reciting the Pledge of Allegiance in school had “constitutionally protectible interests” that might be in conflict with the interests of her father.
Professor Whelan combines this implication of at least some rights held by the child with the Court’s reasoning in Cruzan v. Missouri Department of Health. There, the patient was an adult, but one incapable of directing her own medical care because she was in a persistent vegetative state. The Supreme Court affirmed the Missouri State Supreme Court’s decision refusing to allow her parents to remove life-sustaining measures, but not because no decision-makers on behalf of an incapacitated person could ever withhold treatment. Rather, the Court held that even assuming that the liberty right includes a decision to decline life-sustaining medical treatment, Missouri’s statute requiring clear and convincing evidence that the incapacitated patient would make such a decision if they were competent to do so did not violate the liberty right. Professor Whelan argues that this perspective has a corollary in the context of PPGT – where the Cruzan Court looked backward to ask what the previously-expressed preferences of the incapacitated person were, any use of PPGT should look forward to ask whether the parents can know whether their child would consent to such genetic testing in the future. Just as the Cruzan court concluded that the patient’s parents could not consent to removing life support because they weren’t sure enough of the patient’s preferences, Professor Whelan concludes that because parents cannot be sure of their child’s future choices around genetic predisposition testing, they should not be able to consent to PPGT.
In the rest of the article, Professor Whelan builds out how a right to future privacy could help guide such a forward-looking decision. Because minors themselves “should possess the primary right to control (1) whether they receive PPGT, (2) whether and how they act on the results, and (3) whether they share the results and with whom,” (P. 1270) any decision to undergo PPGT should not be made by a child’s parents. She argues that the harm of knowing and sharing the results of PPGT cannot be undone – once disclosed, the bell of test results cannot be un-rung. By contrast, because no actions can or should be immediately taken in response to PPGT results, no utility or urgency outweighs the harms to informational and decisional privacy. Given this imbalance, Professor Whelan argues that consent to PPGT should only be given by the child themselves once they are capable of directing their own medical care. Her analysis is admirably nuanced, acknowledging the potential misuses of such a right to future privacy and how the balancing would shift if further medical innovations indicate that preventative steps could be taken during childhood.
Professor Whelan intends her article to lay conceptual groundwork and begin, rather than end, discussion. It is this sparking and reframing of debates in other contexts that may be most valuable – PPGT, while a fascinating jumping-off point for her normative arguments, is, as she acknowledges, a moving target as medicine and technology develop and make such tests more available and more comprehensive in their results. Her articulation of the right to future privacy, however, is useful in a variety of scenarios in which a child’s interests potentially diverge from their parents as well as their state government. Professor Whelan uses the example of gender affirming care for transgender children in a few places in the article to illustrate how current law frames medical care through a lens of parent, child, and state as potential decisionmakers who sometimes come into conflict, a subject I have previously written about. We share a concern for the absence of claims brought squarely on behalf of the children, rather than their parents or doctors. The right to future privacy can be extended further than Professor Whelan’s discussions within this article, moreover, to help illuminate a particular harm of statutes that deny gender affirming care, particularly the denial of puberty blockers: the privacy of that child later in life.
It is not the goal of every transgender and nonbinary person to “pass” as a cisgender person, nor should it be. But it is the goal of some transgender people that their physical body express their gender identity, and puberty blockers make that goal more attainable. The impact goes beyond the copious evidence that trans youth who have access to puberty blockers have better mental health outcomes, as well as the greater risks of harassment and violence to which trans people (particularly women of color) are subjected. Trans children know what puberty blockers are, know what they do, and know that if denied that care, their bodies will undergo permanent changes during puberty that they do not want. As Leelah Alcorn, a transgender girl who tragically died by suicide in 2015, wrote in a Tumblr post scheduled to go online after her death, “The longer you wait, the harder it is to transition. I felt hopeless, that I was just going to look like a man in drag for the rest of my life.” Denial of puberty blockers is a harm that transgender youth may not be able to remedy even if they are able to access gender affirming care after they are adults.
The result, as Leelah Alcorn described it, is a worry that their body will never represent their gender identity. And growing up in the current political climate, it is natural that transgender youth would view public identification of themselves as trans as negative, even dangerous. The harm of denying gender affirming care thus includes a dimension of Professor Whelan’s right to future privacy: a right to choose whether or not to disclose one’s transgender identity in the future.
This brief review obviously only scratches the surface of one implication of Professor Whelan’s article, but demonstrates the rich analysis that her groundwork supports. Not only does she educate the reader about PPGT specifically, but her conceptual work explaining the right to future privacy is one that could help inform discussion of children’s rights at a time that novel approaches are particularly needed.
