‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others

Largent, Emily A.; Stites, Shana D.; Harkins, Kristin; Karlawish, Jason

doi:10.1093/jlb/lsab004

Cited by 19 publications

(38 citation statements)

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“…Cognitively unimpaired adults who have received an “elevated” amyloid‐β PET scan result describe that result as different from other medical test results because their mind is an important facet of their identity, and if others learn the result, they may experience stigmatization and discrimination 9,14 . The individuals we interviewed also saw the amyloid‐β PET scan result as different than other medical test results.…”

Section: Discussionmentioning

confidence: 94%

“…Relatedly, prior studies suggest that some cognitively unimpaired individuals share their AD biomarker results with family members or friends because they would like to be monitored for incipient changes in cognition. 14,31 Others, though, perceive monitoring as intrusive and unwelcomed. 14,32 We found that disclosure of AD dementia risk information can prompt monitoring, suggesting a point of friction if cognitively unimpaired adults and their families do not agree on the value of monitoring.…”

Section: Discussionmentioning

confidence: 99%

“…We found that AD dementia risk information can also influence family members' and friends' perceptions of memory and thinking. Relatedly, prior studies suggest that some cognitively unimpaired individuals share their AD biomarker results with family members or friends because they would like to be monitored for incipient changes in cognition 14,31 . Others, though, perceive monitoring as intrusive and unwelcomed 14,32 .…”

Section: Discussionmentioning

confidence: 99%

“…14,31 Others, though, perceive monitoring as intrusive and unwelcomed. 14,32 We found that disclosure of AD dementia risk information can prompt monitoring, suggesting a point of friction if cognitively unimpaired adults and their families do not agree on the value of monitoring.…”

Section: Discussionmentioning

confidence: 99%

“…Learning dementia risk information precipitates changes in health behaviors and future plans and raises concerns around stigma and discrimination. [7][8][9][10][11][12][13][14] This suggests the need to understand the preclinical AD experience of families as well, because family members share in AD dementia risk-whether directly due to shared risk factors or indirectly due to their likelihood of becoming caregivers. Moreover, family members may be asked to monitor the patient-in-waiting for changes in cognition and function or to engage in planning for the future.…”

Section: Introductionmentioning

confidence: 99%

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Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Largent

Abera

Harkins

et al. 2021

J American Geriatrics Society

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Background/Objectives: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. Design and Setting: Semi-structured telephonic interviews.Participants: Seventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research. Measurement:Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory.Results: Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans. Conclusion:Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Largent

Abera

Harkins

et al. 2021

J American Geriatrics Society

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Clinical Practice in the Alzheimer Biomarker Era—Drugs for the Brain and Care for the Mind

Karlawish

2023

JAMA Netw Open

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Alzheimer disease, unlike conditions like hypertension, must speak to be diagnosed. For much of the 20th century, diagnosis required a person to recount a story of their own or their loved one's disabling cognitive impairments or dementia. The 21st century discovery of mild cognitive impairment relaxed the criteria for disability diagnosis. Persons experiencing simple inefficiencies in performing their usual and everyday activities could be diagnosed with Alzheimer disease. Spectacular advances in biomarker technologies measuring β-amyloid and hyperphosphorylated tau proteins, together with neurodegeneration, the 2 pathological hallmarks of the disease, show promise that someday, perhaps quite soon, persons who do not have any measurable cognitive impairments could be diagnosed with Alzheimer disease. This study by Caprioglio et al 1 for the European Amyloid Imaging to Prevent Alzheimer Disease initiative, known as AMYPAD, reports their efforts to explain what this novel clinical practice might be like.Caprioglio and colleagues 1 report that telling a person with subjective cognitive decline that their brain has elevated levels of β-amyloid was not associated with notable increases in measures of anxiety or depression. Subjective cognitive decline describes a kind of liminal existence; a person is neither healthy nor impaired. Definitions vary, unfortunately, but the study by Caprioglio et al 1 described a person with at least 5 years of bothersome cognitive problems whose metric assessments of cognition showed no impairments.However, knowledge of elevated amyloid was not benign. It was associated with increases of scores on the Impact of Events Scale, a measure of the distress precipitated by witnessing a traumatic event. Persons endorsed a host of behaviors and moods, such as feeling preoccupied or distracted with the information and seeking to avoid the topic. This finding recapitulates similar studies of β-amyloid disclosure. 2 Persons who learned a test result that their β-amyloid levels were not elevated did not report having any of these experiences. 3 They uniformly describe one feeling: relief. Their mind at ease, they reinterpreted their cognitive problems as normal aging. The event fades and is soon forgotten.In contrast, persons with elevated β-amyloid levels experienced a change of mind. They reported an increase in their estimated lifetime risk of developing dementia. They wanted metric data, not just a report of elevated β-amyloid. 4 Some individuals developed a preoccupation with their future. 5 They think over plans for retirement, leisure, and living arrangements with attention to proximity to friends and family. Concerns of stigma and discrimination may cause them to consider with whom they may share the result.The AMYPAD consortium recruited persons with a positive biomarker test result for drug studies seeking an intervention to prevent or delay the onset of cognitive impairments caused by neurodegenerative diseases. Prevention is inspiring. This is the primary goal of the US national Alzheim...

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Disclosing Alzheimer Disease Biomarker Results to Research Participants

Grill

Karlawish

2022

JAMA Neurol

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Biomarker measures of the signature pathologies of Alzheimer disease, such as β-amyloid plaques and tau neurofibrillary tangles, are transforming how researchers study and clinicians diagnose the disease. 1 Biomarkers present notable opportunities to improve the health and well-being of persons living with mild cognitive impairment (MCI) or dementia. Patients can use the results to learn the cause of their cognitive impairments, make plans for the future, and enroll in drug studies whose goal is to slow cognitive decline. Someday, a patient may use biomarker test results to decide whether to take a safe and effective disease-slowing drug.Unfortunately, the translation of these biomarkers into clinical practice has been slow and uneven. Several imaging markers and 1 blood test are approved by the US Food and Drug Administration, but insurers are reluctant to cover them. One setting in which these measures are used routinely is clinical research, particularly longitudinal cohort studies that examine secular changes in clinical characteristics and biomarkers. Yet even when participating in research, patients with MCI and dementia don't routinely have the opportunity to learn biomarker results. A 2021 survey of 30 Alzheimer's Disease Research Centers (ADRCs) funded by the National Institute on Aging found that a little more than half of these centers returned results from amyloid positron emission tomography (PET) to research participants, and less than 20% returned tau PET results. 2 In contrast, 83% of the surveyed ADRCs returned research diagnoses of either dementia or MCI to participants.This disconnect between returning clinical vs biomarker results likely reflects enduring practices whose origins predate advances in biomarker diagnostics. Ethical, practical, and scientific reasons should compel clinician-investigators to align their willingness to disclose biomarker results and their willingness to disclose clinical diagnoses. Those working at ADRCs are in an ideal setting to execute this translation.Research and care are distinct activities; the former discovers valuable knowledge and the latter helps individuals. Confounding research as care creates an opening to ethical dilemmas. The ethics of human participants research sustains this distinction and avoids such dilemmas through institutional review board involvement, informed consent, and participant compensation. However, activities performed in research sometimes discover knowledge that, in all but name, is care. How should a researcher decide when research data ought to be treated as clinical information? When ought a researcher offer patients their research results?The ethical criteria support returning results that are valid, interpretable, and actionable. 3 Amyloid and tau PET results meet all 3 of these criteria. Food and Drug

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‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others

Cited by 19 publications

References 0 publications

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Clinical Practice in the Alzheimer Biomarker Era—Drugs for the Brain and Care for the Mind

Disclosing Alzheimer Disease Biomarker Results to Research Participants

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