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"Perry, Julia"
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Facing the new diagnostic and treatment options of Alzheimer's disease: The necessity of informed consent
by
Perry, Julia
,
Haberstroh, Julia
,
Jessen, Frank
in
Alzheimer Disease - diagnosis
,
Alzheimer Disease - therapy
,
anti‐amyloid therapy
2025
With advances in biomarker‐based detection of Alzheimer's disease (AD) and new treatment options with disease‐modifying treatments (DMTs), we are heading toward a new conceptualization of diagnostics and therapy in the early stages of AD. Yet consensus guidelines on best clinical practices in predictive AD diagnostics are still developing. Currently, there is a knowledge gap regarding counseling and disclosure practices in early symptomatic disease stages, its implications for dementia risk estimation, and DMTs with associated risks and benefits. The crucial feature is the capacity of patients with (mild) cognitive impairment, eligible for DMTs, to consent. This perspective aims to (1) discuss the current challenges in assessing capacity to consent and (2) highlight the importance of a supported (informed) decision‐making process. Measures to facilitate informed decision‐making of patients constitute an ethical approach to enhancing the quality of care in this evolving therapeutic landscape. Highlights This perspective: Explores biomarker‐based early symptomatic AD detection and the implications for patient care. Emphasizes supported decision‐making in DMTs for MCI and dementia patients. Discusses the need for standardized tools to assess the capacity to consent. Aligns diagnostic and treatment approaches with ethical care standards. Enhances patient autonomy in the evolving AD therapeutic landscape.
Journal Article
Fair allocation of telemedical counseling services in early detection of Alzheimer's disease: Empirically informed ethical considerations
2025
INTRODUCTION Counseling for early Alzheimer's disease (AD) detection is essential, especially regarding emerging blood‐based biomarkers. The increasing need for counseling requires innovative approaches and simultaneously consideration of ethical issues. ETHICAL CONSIDERATIONS Telemedicine is discussed as a means of providing more accessible and fairer health care. Nevertheless, barriers to accessing telemedicine are important to consider, such as required technical hardware and ethical criteria regarding interpersonal counseling, including individual adaptation of information to ensure self‐determined decision‐making. Regarding resource allocation, issues must be considered before telemedicine is implemented. THEORETICAL REFLECTION Fair counseling structures require the discussion of resource allocation. To avoid justifying telemedical counseling based solely on cost‐effectiveness and overlooking further ethical demands, we propose a ranked approach. To strengthening self‐determined decisions, we argue that equal care structures can be built on these prerequisite aspects and enable realization of fair resource allocation as a last step. Highlights Blood‐based biomarkers in Alzheimer's disease (AD) facilitate easier access to risk assessment and early detection. Currently, insufficient pre‐diagnostic counseling structures exist which support informed decision‐making. Telemedicine may be a meaningful approach for innovative counseling services. However, unresolved ethical and legal issues regarding telemedical counseling services for the early detection of AD must first be addressed. Telemedical counseling in the early detection of AD is yet rarely discussed in the literature. Therefore, we combine insights from ethical analysis of telemedical counseling with the ethical issues of fair and empowering counseling in the early detection of AD separately. In a second step, we discuss the use of telemedical counseling for the early detection of AD inductively to highlight ethically relevant aspects and present our considerations in light of the principles of autonomy, non‐maleficence, beneficence, and justice. To provide ethical guidance for possible future implementation without overprioritizing one approach to counseling for the early detection of AD, considerations regarding fair resource allocation are required. We argue that three major ethical topics should be considered in the future: Strengthening individuals’ autonomy, equal care structures, and fair resource allocation.
Journal Article
Motivations for people with cognitive impairment to complete an advance research directive – a qualitative interview study
by
Jongsma, Karin
,
Perry, Julia
,
Schicktanz, Silke
in
Advance directives
,
Alzheimer's disease
,
Blood & organ donations
2020
Background
Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Little is known about how people, especially those affected by cognitive impairment, understand and regard the use of ARDs, as empirical studies are mainly conducted with healthy, non-cognitively impaired, participants.
Methods
This qualitative study, a sub-study of a larger study on the evaluation of ARDs in the context of dementia research in Germany, consists of semi-structured in-depth interviews with 24 persons with cognitive impairment.
Results
Our results indicate that most participants consider ARDs a valuable tool for allowing them to make their own decisions. Many would prefer to draft an ARD when they are still healthy or soon after the diagnosis of cognitive impairment. Participants suggested that the completion of ARDs can be advanced with the provision of practical support and increased dissemination of information on ARDs in society.
Conclusion
Persons with subjective or mild cognitive impairment (SCI/MCI) suggested several motivating factors and concerns for completing an ARD. Clinicians need to be trained to accommodate patients’ needs for sufficient and adequate information. Furthermore, a standardised, partly pre-formulated template could be helpful for drafting an ARD. As such tested templates are currently not yet available, this addresses the urgent need for more translational and implementation research for the use of ARDs.
Journal Article
Benchmarking of survival outcomes following haematopoietic stem cell transplantation: A review of existing processes and the introduction of an international system from the European Society for Blood and Marrow Transplantation (EBMT) and the Joint Accreditation Committee of ISCT and EBMT (JACIE)
by
Wilcox, Leonie
,
Dolstra Harry
,
Corbacioglu Selim
in
Autografts
,
Benchmarks
,
Hematopoietic stem cells
2020
In many healthcare settings, benchmarking for complex procedures has become a mandatory requirement by competent authorities, regulators, payers and patients to assure clinical performance, cost-effectiveness and safe care of patients. In several countries inside and outside Europe, benchmarking systems have been established for haematopoietic stem cell transplantation (HSCT), but access is not universal. As benchmarking is now integrated into the FACT-JACIE standards, the EBMT and JACIE established a Clinical Outcomes Group (COG) to develop and introduce a universal system accessible across EBMT members. Established systems from seven European countries (United Kingdom, Italy, Belgium, France, Germany, Spain, Switzerland), USA and Australia were appraised, revealing similarities in process, but wide variations in selection criteria and statistical methods. In tandem, the COG developed the first phase of a bespoke risk-adapted international benchmarking model for one-year survival following allogeneic and autologous HSCT based on current capabilities within the EBMT registry core dataset. Data completeness, which has a critical impact on validity of centre comparisons, is also assessed. Ongoing development will include further scientific validation of the model, incorporation of further variables (when appropriate) alongside implementation of systems for clinically meaningful interpretation and governance aiming to maximise acceptance to centres, clinicians, payers and patients across EBMT.
Journal Article
Ethics, design, and implementation criteria of digital assistive technologies for people with dementia from a multiple stakeholder perspective: a qualitative study
by
Perry, Julia
,
Biernetzky, Olga A.
,
Köhler, Stefanie
in
Adaptive technology
,
Aged
,
Assistive technology
2024
Background
Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia.
Methods
We applied a qualitative approach and conducted a World Café (2 tables,
n
= 7) and an online focus group (
n
= 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach.
Results
The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT’s use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT.
Conclusion
The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.
Journal Article
Using Population Genetic Theory and DNA Sequences for Species Detection and Identification in Asexual Organisms
2010
It is widely agreed that species are fundamental units of biology, but there is little agreement on a definition of species or on an operational criterion for delimiting species that is applicable to all organisms.
We focus on asexual eukaryotes as the simplest case for investigating species and speciation. We describe a model of speciation in asexual organisms based on basic principles of population and evolutionary genetics. The resulting species are independently evolving populations as described by the evolutionary species concept or the general lineage species concept. Based on this model, we describe a procedure for using gene sequences from small samples of individuals to assign them to the same or different species. Using this method of species delimitation, we demonstrate the existence of species as independent evolutionary units in seven groups of invertebrates, fungi, and protists that reproduce asexually most or all of the time.
This wide evolutionary sampling establishes the general existence of species and speciation in asexual organisms. The method is well suited for measuring species diversity when phenotypic data are insufficient to distinguish species, or are not available, as in DNA barcoding and environmental sequencing. We argue that it is also widely applicable to sexual organisms.
Journal Article
Genomewide Association Scan of Suicidal Thoughts and Behaviour in Major Depression
2011
Suicidal behaviour can be conceptualised as a continuum from suicidal ideation, to suicidal attempts to completed suicide. In this study we identify genes contributing to suicidal behaviour in the depression study RADIANT.
A quantitative suicidality score was composed of two items from the SCAN interview. In addition, the 251 depression cases with a history of serious suicide attempts were classified to form a discrete trait. The quantitative trait was correlated with younger onset of depression and number of episodes of depression, but not with gender. A genome-wide association study of 2,023 depression cases was performed to identify genes that may contribute to suicidal behaviour. Two Munich depression studies were used as replication cohorts to test the most strongly associated SNPs. No SNP was associated at genome-wide significance level. For the quantitative trait, evidence of association was detected at GFRA1, a receptor for the neurotrophin GDRA (p = 2e-06). For the discrete trait of suicide attempt, SNPs in KIAA1244 and RGS18 attained p-values of <5e-6. None of these SNPs showed evidence for replication in the additional cohorts tested. Candidate gene analysis provided some support for a polymorphism in NTRK2, which was previously associated with suicidality.
This study provides a genome-wide assessment of possible genetic contribution to suicidal behaviour in depression but indicates a genetic architecture of multiple genes with small effects. Large cohorts will be required to dissect this further.
Journal Article
Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review
by
Perry, Julia
,
Geschke, Katharina
,
Rostamzadeh, Ayda
in
Alzheimer Disease - diagnosis
,
Alzheimer Disease - psychology
,
Alzheimer's disease
2024
New possibilities of biomarker‐based predictive technologies for Alzheimer's disease (AD) have become more reliable as well as more accessible. Standardized clinical recommendations and guidance for counseling and disclosure in this context are not yet well developed. Our scoping review identified publications from database searches in PubMed, PsycINFO, LIVIVO, and Web of Science. Inclusion criteria were: (1) information or counseling, (2) biomarkers and a type of cognitive impairment or AD, and (3) published between 2005 and 2024. We identified 63 articles and synthesized them along the categories of staged information provision: pre‐test counseling, disclosure, and post‐disclosure follow‐up. Most publications referred to the context of disclosure (48), followed by pre‐test counseling (33), and post‐disclosure follow‐up (31). Some publications referred to all stages of counseling (17). Our findings highlight the need to further develop and specify comprehensive and standardized guidelines for counseling, disclosure, and post‐disclosure follow‐up in the context of AD biomarker testing. Highlights New possibilities of biomarker‐based predictive technologies for Alzheimer's disease (AD) have become more reliable and also more accessible. However, clinical recommendations and guidance for counseling and disclosure in the context of AD biomarker testing are currently not well developed. We carried out a scoping review with the aim to generate an overview of the scientific literature and guidance available regarding counseling, biomarker test result and dementia risk disclosure, and clinical management prior to and in the course of a biomarker‐based diagnosis in early stages of AD. We identified 63 relevant articles. Most publications referred to the context of disclosure (48), followed by pre‐test counseling (33), and post‐disclosure follow‐up (31). Some publications referred to all stages of counseling (17). Our findings highlight the urgent need for national and international consensus guidelines for comprehensive and staged counseling and disclosure practices. While most publications identify relevant ethical challenges posed for counseling practices in the context of AD biomarker testing, they rarely present any practical recommendations for clinicians, on how and what to counsel on a concrete level.
Journal Article
Responsibility in dealing with genetic risk information
2021
Predictive testing information raises questions about risk communication, health responsibility, and about how to deal with the gap between knowledge of risks and options to act on this knowledge. For some diseases identified by predictive testing, specific treatments or interventions are available, while other diseases, thus far, remain untreatable or unpreventable; this triggers different forms of responsibility. Gender also often intersects with moral responsibility, regarding risk communication but also responsibilities of care which may become necessary with a family member’s onset of disease. The aim of the study was to analyze laypeople’s attitudes towards predictive testing with a special focus on forms of responsibility arising while dealing with uncertainty of risk information. We conducted seven focus groups with laypeople (n = 43) in four German cities in 2016. Participants were provided with different genetic testing scenarios (breast cancer, early-onset Alzheimer’s disease, pharmacogenetics in rectal cancer) for discussing their responsibilities and risk perceptions. We identified three different forms of responsibility: self-responsibility and self-care, family responsibility and care for others, and professional responsibility. For laypeople, the decision for predictive genetic testing seems voluntary and free from external constraint; however, both family and professional conditions influence an individual’s decision.
Journal Article
Personality Assessment in Treatment Planning
by
Perry, Julia N.
,
Butcher, James N.
in
Clinical psychology
,
Minnesota Multiphasic Personality Inventory
,
Personality assessment
2008
The establishment of frank and honest communication is one of the most important early goals of psychotherapy. Indeed, the most prominent challenge in the early stages of treatment is to develop a comfortable relationship that allows disclosure. In this volume, the authors show that objectively interpreted personality measures can be applied in psychotherapeutic assessments to facilitate an understanding of the patient and a thriving treatment program. Successful psychotherapy depends upon an early understanding of the patient's problems and personality and the establishment of attainable treatment goals. The extensive accumulated base of knowledge about personality and its maladjustment has become crucial when making treatment decisions about individuals in psychotherapy, and the field of personality assessment provides both methods and substantive information to support treatment-oriented evaluation. The MMPI has a long tradition of providing personality information about clients in mental health settings since the 1940s. James Butcher participated in the creation of the Minnesota Multiphasic Personality Inventory (MMPI-2) in 1989, which has continued to be one of the most commonly used personality tests in clinical evaluation. Over a thousand studies have been conducted on the effectiveness of the MMPI in treatment related assessments. Here, Butcher and co-author Julia Perry explore the MMPI-2 as well as a new assessment tool, the Butcher Treatment Planning Inventory (BTPI). In using psychological evaluation techniques for treatment planning, many clinicians incorporate information from a broad base of instruments-clinical interview, projective testing, behavioral data, and personal history-and do not rely on data from a single source. Therefore, while this volume focuses on the use of the MMPI-2 and the BTPI in treatment planning, it will provide a context not to the exclusion of other measures.