Testing and Neuroimaging for Youth at Risk for Mental Illness: Trading off Benefit and Risk


N = 38 (%)



19 (54)


19 (46)

Marital status


25 (66)


9 (24)

  Common law

1 (3)


2 (5)


1 (3)



24 (63)


5 (13)

  Registered nurse

3 (8)

  Social worker

2 (5)


2 (5)

  Mental health clinician

2 (5)



21 (55)


20 (53)

  Bipolar disorder

14 (37)

  Autism spectrum

12 (32)


11 (29)

Highest level of education completed


2 (5)


10 (26)

  Medical degree

22 (58)


4 (11)

Age (Range 30–75 years)

Mean (SD)
40 (6)

Overall, three interrelated themes represent the potential benefits that participants attach to neuroimaging and genetic testing . These themes underscore their optimism for eventually including neuroimaging and genetic testing into routine clinical care: (1) improved understanding of the brain and mental health conditions, (2) evidence-based diagnosis to facilitate accuracy and early detection, and (3) legitimization of treatment plans. Respondents also express concerns about risk in terms of: (1) misuse or misinterpretation of results, (2) societal impacts on employment and insurance, and (3) infringements on self-esteem or motivation.

3.1 Benefits

3.1.1 Improved Understanding of the Brain and Mental Health Conditions

Interview respondents acknowledge the potential valuable contributions of neuroimaging for clarifying the patient’s and family’s understanding of mental illness. Participants regard an improved understanding as a prerequisite for an initial acceptance or admission of the diagnosis.

I think there would be more compassion for what the patient is enduring. Because with many mental health diagnoses, let’s just say depression as an example, I think there’s a lack of compassion that people seem to feel you can snap out of it. But having a brain scan to indicate this is not the patient’s fault it’s something that is going on in the body. And, I think it would be helpful for all of us to have a clearer understanding, to help us appreciate that, you know, these changes are very real (Participant #006, Registered Nurse).

Overall, providers perceive the clinical benefits of neuroimaging as far outweighing the risks, by mitigating conflicts arising from the doctor-patient relationship or offering confidence measures in diagnosis.

Because the doctors will have some confidence about what they’re showing, the modality that they’re using is important and worth the time and the money that’s involved (Participant #103, Psychiatrist).

[Brain imaging] would give a clinician a lot of information about the illness and the condition at hand and its response to the treatment. And it will be a very important addition to other kinds of clinical information gathered through other avenues or other techniques (Participant #107, Psychiatrist).

In parallel, providers feel that genetic testing would provide a reliable diagnosis for a young patient’s symptoms. Participants’ support for genetic testing in the context of improving the current understanding of mental illness relates to their values of having a definitive diagnostic option and mitigating anxieties around insufficient clinical information.

[Genetic testing] would clarify what they’re experiencing. It would just reify it. The disorders in psychiatry and psychology are distorted; [they] are right now, currently, clusters of symptoms . . . So, this would make it more concrete, and that would, actually, really change the nature of the psychiatric diagnostic because it would all of a sudden have something concrete. That could be the defining thing about whether a disorder exists or not (Participant #048, Psychologist).

Sometimes just having a name to be able to put to what’s going on, sometimes just that is a relief. I think it’s also a relief because knowing what it is, whether this is true or not, but knowing what it is feels like (Participant #044, Counselor).

For some clients, having information about their genes may be—they may feel more normalized, they may understand their symptoms better, they might feel, you know, “okay, now I understand why things are the way they are.” Versus other people [who] may not believe in that (Participant #055, Counselor).

3.1.2 Evidence-Based Diagnosis to Facilitate Accuracy and Early Detection

Under this general theme, three sub-themes touch on the potential for both modalities to have an impact on mental health diagnosis, diagnostic precision, evidence-based diagnosis, and early detection of mental illness. Diagnostic precision is attributed to the apparently objective nature of brain scans and their perceived ability to differentiate mental disorders with behaviorally indistinguishable phenotypes. In such circumstances, clinical utility of neuroimaging is widely described as a clarification of potentially disputable diagnoses by providing evidence of brain characteristics consistent to a particular disorder.

So, if there could be some definitive test that says, “Yes, this child really has the brain characteristics of what you see in bipolar disorder.” If that were identified, it would be helpful, I think, in treatment for sure—choosing the appropriate medications and kind of overall treatment planning. So that would be terrific to have (Participant #111, Psychiatrist).

Well I think one of the biggest confounding factors is for us to have a more universal understanding of what diagnosis is. So maybe this would actually help us, by having imaging, because there’s so much controversy of how to frame diagnosis . . . So perhaps neuroimaging would actually help resolve that (Participant #125, Psychiatrist).

Providers value early intervention for effective symptom management, and attribute the accomplishment of this goal to the diagnostic accuracy offered by neuroimaging .

I think it would have good impact in that there would be some public health benefit to early diagnosis, early case findings, and in terms of preventing worsening of disorders (Participant #120, Psychiatrist).

Similarly, participants postulate that genetic testing would improve diagnostic accuracy by providing a scientific basis for validation, and hence minimize the crucial time window between diagnosis and treatment.

Yeah, if it made the assessment process—like if you could diagnose something, it might make the assessment process go faster, which might mean we could get the treatment sooner (Participant #044, Registered Nurse).

Respondents’ views are generally convergent between neuroimaging and genetic testing in the context of diagnosing mental illness. Overall, youth providers describe the merits of both modalities as invaluable supplements to their current diagnostic tools. Providers also emphasize their preference to have access to these modalities for initial clinical assessment and for providing validity to their clinical diagnosis.

3.1.3 Legitimization of Treatment Plans

Providers underscore the desirable outcome of improved patient management through more informed and targeted treatment plans. This theme is often associated with the previous major theme of improving diagnosis.

Again we would now have some validity, some agreement. Everybody looking at the picture hopefully would see the same thing and would know the implications and treatment would be more streamlined and specific […] a computer that would sort of use the data and have an ability to match that data and the diagnosis with available treatment. So there would be a greater validity to that as well, more evidence based treatment (Participant #103, Psychiatrist).

Providers suggest that youth at risk would feel empowered by having this insight into their future well-being, and hence take a proactive approach in seeking treatment promptly or making lifestyle changes to possibly prevent or delay symptom onset. In their expressed receptivity to neuroimaging in the context of patient management, participants extrapolate a role for neuroimaging in evaluating current clinical treatment protocols.

[…] it will also help more specific treatments to be found and explored and discovered for certain illnesses that have some neuroimaging-related findings. So it can have not only diagnostic classification but also developing specific treatment for conditions (Participant #107, Psychiatrist).

So, if I had a brain imaging scan where I could have someone come back in after they’re on medicine, check the brain scan and see how much of that seems to have been corrected in terms of the biology, then I have a better sense that yes, we’ve got the right kind of medicine, it’s doing what it should be doing biologically, and yet we’re still having difficulties (Participant #116, Psychiatrist).

Providers affirm that parents would like to know whether their child will have a future without mental illness, especially because the availability of a test that could give either a positive or negative predictive value would help establish an early informed treatment. A positive predictive value would empower health care providers to search for interventions directed toward changing the subsequent course of the disease. On the other hand, a negative predictive value would increase the family’s awareness of the possibility of emerging symptoms and dispel any hesitation to seeking mental health care.

3.2 Risks

3.2.1 Misuse or Misinterpretation of Results

Participants anticipate that disclosure of neuroimaging findings associated with mental illness might refocus the goal of care toward routinely prescribing treatment for acute symptoms. The focus on prescribing treatment would result in replacement of thorough clinical assessment with neuroimaging to guide medication recommendations. Providers feel that this would be an unjustified use for neuroimaging results. Many providers feel that time may be better spent trying to understand the child’s background and experiences to derive a clearer context upon which to make a diagnosis.

Overall I think it’s a positive move, but again it needs to be correlated with the clinical situation, discussed with the patient in an appropriate way and against one of the many tools that we use to evaluate patients. So the larger clinical context, it needs to be put into that context. If it’s not, I think it could be misused—or people could come to the wrong conclusion on what a certain set of data may mean that’s revealed from the image (Participant #134, Psychiatrist).

Participants also stress the importance of helping the family understand brain scan results in a manner that responsibly incorporates privacy and cultural considerations. Providers urge for better correlation of neuroimaging results with the clinical condition, and for more appropriate discussion of the results in the larger clinical context of brain imaging as one of the many tools used to evaluate patients. They express concerns that misinterpretation of results may cause young individuals to be passive about moral responsibility.

People may then use that information to try to absolve themselves of some responsibility for their actions and say, “Well, you know, I can’t help it. It’s just the way my brain is wired” (Participant #133, Psychiatrist).

Similarly, providers express concerns about the careful handling of genetic information given its probabilistic nature, and stress the importance of education and support for both the family and the individual.

I guess I would be more concerned about what’s done with that information afterwards as long as there’s education and support for the family or the individual, even though there are say genetic factors that are put into place (Participant #036, Psychiatrist).

Related concerns for medical privacy are raised in the context of access to medical records containing diagnostic and treatment information following neuroimaging or a genetic test. There is an emphasis on the need for establishing safeguards to prevent misuse of these results that could impose limitations on access and cost of health care.

3.2.2 Societal Impacts on Employment and Insurance

Under this theme, respondents address the societal impact of neuroimaging or genetic testing on individuals and their support pillars. Participants expect both increased demands for neuroimaging and genetic testing , and respond to this expectation with concerns about eligibility for employment and insurance.

[…] someone who is labeled as potentially developing a certain mental illness. There might be employment opportunities, schooling opportunities that would be closed to you if people knew that you were at risk for those conditions (Participant #103, Psychiatrist).

There is a lot of concern about any kind of prediction of a mental health or a physical health problem that could impact a person’s eligibility for insurance coverage and medical care (Participant #109, Psychiatrist).

And here you have we’re again labeling someone as inevitably developing a condition that would perhaps interfere with their job perspective, or relationships. So [brain imaging] would open up, that person for further risk, other sorts of difficulties. It’s like any screening tool, now that you know you have it what can you do about it? (Participant #103, Psychiatrist).

Are people, are employers in the future going to be able to access some kind of [genetic testing] database that says, “You’ve got the depression gene, I don’t want to hire you because you might get depressed in 5 years and miss work.” I mean there’s all these room for abuses later on (Participant #128, Counselor).

Participants recount how the knowledge of being at risk for mental illness may affect parent hopes and dreams for the child and cause emotional changes to family dynamics. Participants further express concerns about possible detrimental effects of neuroimaging and genetic testing on parents, and in turn, how they relate to the child.

For some families, knowing that means they are going to change the way they feel about that child. They’re going to change their expectations, in a negative way, and perhaps distance themselves. Or more or less reject the child (Participant #127, Psychiatrist).

I would hate for a parent to either lose hope in their child, you know, because they’re thinking, “Oh, this is where we’re going to end up anyway. So, what’s the point of doing any of these interventions right now, or getting the help that my child needs?” (Participant #036, Registered Nurse).

3.2.3 Infringements on Self-esteem and Motivation

Interview participants also anticipate a possible negative impact on self-esteem and motivation as a risk of positive predictive testing for mental illness. Participants describe a double-edged scenario where brain imaging has the potential to provide clarity on one hand, while condemning individuals into misery associated with morbidity or even mortality in some instances. Several providers express concerns that both neuroimaging and genetic testing would have adverse influences on an individual’s attitude or outlook in their private thoughts and outward expressions despite having an informed treatment plan.

[Brain imaging] is also very limiting and may impact client’s motivation levels. And kind of may set them up for a doomed kind of scenario as opposed to a resilient hopeful scenario (Participant #023, Counselor).

I think no matter what the news is about genetic testing, it would definitely impact an individual’s perception of themselves and their, their behavior, their environment, their development; their life, really (Participant #058, Registered Nurse).

To the extent that a predictive diagnosis may impact an individual’s behavioral development, practitioners consider the vulnerability to develop affective characteristics such as apathy, depression, and apprehensiveness.

So you’d worry about suicide, you’d worry about people falling short of their expectations, not pushing themselves (Participant #125, Psychiatrist).

There may be the sense of, “Hey, this is the way the brain is, and nothing can change.” There can be a sense of feeling defeated or feeling that their opportunities in the future are limited (Participant #133, Psychiatrist).