scholarly journals ‘It’s much more grey than black and white’: clinical geneticists’ views on the oversight of consumer genomics in Europe

2020 ◽  
Vol 17 (2) ◽  
pp. 129-140
Author(s):  
Louiza Kalokairinou ◽  
Pascal Borry ◽  
Heidi C Howard
Keyword(s):  
Iterative Process ◽  
Healthcare Professionals ◽  
Quality Standards ◽  
Healthcare Setting ◽  
European Countries ◽  
Structured Interviews ◽  
Genetic Tests ◽  
Black And White ◽  
Direct To Consumer ◽  
Risks And Benefits

Aim: Direct-to-consumer (DTC) genetic tests (GT) have created controversy regarding their risks and benefits. In view of recent regulatory developments, this article aims to explore the attitudes of European clinical geneticists toward the oversight of DTC GT. Materials & methods: Fifteen semi-structured interviews were performed with clinical geneticists based in ten European countries. The transcripts were thematically analysized in an iterative process. Results & conclusion: Respondents strongly supported quality standards for DTC GT equal to those applied within the healthcare setting. Despite participants unanimously considering the involvement of healthcare professionals to be important, mandatory medical supervision was controversial. In this regard, promoting education and truth-in-advertising was considered as being key in maintaining a balance between protecting consumers and promoting their autonomy.

scholarly journals European citizens’ perspectives on direct-to-consumer genetic testing: an updated systematic review

2020 ◽  
Author(s):  
Ilda Hoxhaj ◽  
Jovana Stojanovic ◽  
Stefania Boccia
Keyword(s):  
Systematic Review ◽  
Data Privacy ◽  
English Language ◽  
Population Group ◽  
Original Data ◽  
European Countries ◽  
Common Disease ◽  
Publication Date ◽  
Genetic Tests ◽  
Direct To Consumer

Abstract Background Direct-to-consumer genetic tests (DTC-GTs) are genetic tests for a medical or non-medical trait that are sold directly to the public, usually ordered without the engagement of a healthcare professional. Our aim was to explore the knowledge, attitudes and behaviors toward DTC-GTs among European citizens. Methods We updated the most recent systematic review on citizens’ perspectives toward DTC-GTs. Relevant English language studies were searched on PubMed, ISI Web of Science, Scopus, Embase and Google Scholar from October 2014 to April 2019. We extended our search on Scopus without publication date restriction, since it was not included in the former review. Eligible studies were conducted in European countries and reported original data. The quality of the studies was evaluated using a checklist developed by Kmet et al. Results We included six studies conducted in European countries between 2015 and 2018. The studies were performed among general population in the Netherlands, students in Italy and Greece, laypeople in Germany and older adults in Switzerland. The level of awareness, in overall low, differed by country and population group. Most of the participants were interested in undergoing a DTC-GT, mainly for knowing the risk predisposition to a common disease. Concerns were raised about tests’ validity and utility and data privacy. Conclusions Our review shows that European citizens, overall, have a low level of knowledge on DTC-GTs and a high interest in their purchase. This understanding might contribute to the development of educational programs in order to the increase of general public capabilities to make appropriate health decisions.

scholarly journals Attitudes and opinions of Oral healthcare professionals on screening for Type-2 diabetes

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Rodrigo Mariño ◽  
Andre Priede ◽  
Michelle King ◽  
Geoffrey G. Adams ◽  
Diego Lopez
Keyword(s):  
Type 2 Diabetes ◽  
Oral Health ◽  
Healthcare Professionals ◽  
Healthcare Setting ◽  
Successful Implementation ◽  
Medical Screening ◽  
Structured Interviews ◽  
Healthcare Settings ◽  
Collaboration And Communication

Abstract Background As part of a larger study on the identification of undiagnosed Type 2 diabetes (T2D), and prediabetes patients in dental settings, this study explored oral healthcare professionals’ (OHP) attitudes with respect to the relevance and appropriateness of screening for prediabetes/T2D in general oral healthcare settings. It also aims to gain a deeper understanding of OHPs’ concerns and perceived barriers to screening for T2D. Methods Semi-structured interviews were conducted with 11 OHPs: eight dentists, two dental hygienists and one oral health therapist. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis. Results Themes that emerged from the interviews were organised under three major categories: 1) Implementation: OHPs willingness to screen for prediabetes/T2D; 2) Barriers to implementation of screenings; subdivided into: a) lack of knowledge and formal training about T2D screening methodology; b) concerns about patients’ awareness and acceptance of T2D screening in oral healthcare settings; c) costs and reimbursement for the time and resources required to screen patients; and d) legal and scope of practice; and 3) Collaboration and communication between OHPs and General practitioners (GP). Conclusions The oral healthcare setting was considered as appropriate for medical screening, and OHPs were willing to participate in screening for prediabetes/T2D. Nonetheless, for the successful implementation of a screening programme, several barriers need to be addressed, and effective medical screening would require collaboration between oral health and medical and other health professionals, as well as clarification of legal and reimbursement issues.

scholarly journals Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260340
Author(s):  
James W. Hazel ◽  
Catherine Hammack-Aviran ◽  
Kathleen M. Brelsford ◽  
Bradley A. Malin ◽  
Laura M. Beskow ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Law Enforcement ◽  
Third Parties ◽  
Policy And Practice ◽  
Genetic Tests ◽  
Secondary Use ◽  
Direct To Consumer ◽  
Potential Value ◽  
Risks And Benefits ◽  
And Control

Direct-to-consumer genetic testing is marketed as a tool to uncover ancestry and kin. Recent studies of actual and potential users have demonstrated that individuals’ responses to the use of these tests for these purposes are complex, with privacy, disruptive consequences, potential for misuse, and secondary use by law enforcement cited as potential concerns. We conducted six focus groups with a diverse sample of participants (n = 62) who were aware of but had not used direct-to-consumer genetic tests, in an effort to understand more about what people considering these tests think about the potential value, risks, and benefits of such testing, taking into account use by third parties, such as potential kin and law enforcement. Participants differed widely in the perceived value of direct-to-consumer genetic tests for ancestry and kinship information for their own lives, including the desirability of contact with previously unknown relatives. Some perceived ancestry testing as mere curiosity or entertainment, while others, particularly those who had gaps in their family history, few living relatives, or who were adopted, saw greater value. Concerns about intrusion into one’s life by purported kin and control of data were widespread, with many participants expressing concern about secondary uses of data that could harm users or their families. The use of direct-to-consumer genetic tests data for forensic genealogy elicited a particularly wide array of reactions, both spontaneously and in response to specific discussion prompts, mirroring the current public debate about law enforcement access to such data. The themes uncovered through our investigation warrant specific attention in the continued development of the science, policy, and practice of commercial direct-to-consumer genetic testing.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

Care for delirium superimposed on dementia at an early stage

2020 ◽  
Keyword(s):  
Behavioral Problems ◽  
Healthcare Professionals ◽  
Early Stage ◽  
Good Care ◽  
Structured Interviews ◽  
Ethical Considerations ◽  
Appropriate Care ◽  
Adequate Care ◽  
Insight Into ◽  
Delirium Superimposed On Dementia

Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.

scholarly journals The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

scholarly journals The Lived Experiences of Stigmatization in the Process of HIV Status Disclosure among People Living with HIV in Taiwan

2021 ◽  
Vol 18 (10) ◽  
pp. 5089
Author(s):  
Chia-Hui Yu ◽  
Chu-Yu Huang ◽  
Nai-Ying Ko ◽  
Heng-Hsin Tung ◽  
Hui-Man Huang ◽  
...  
Keyword(s):  
Lived Experiences ◽  
Healthcare Professionals ◽  
Social Stigma ◽  
People Living With Hiv ◽  
Hiv Status ◽  
Structured Interviews ◽  
Two Phases ◽  
Hiv Status Disclosure ◽  
Living With Hiv ◽  
Status Disclosure

People living with HIV (PLWH) face social stigma which makes disclosure of HIV status difficult. The purpose of this descriptive qualitative study was to understand the lived experiences of stigmatization in the process of disease disclosure among PLWH in Taiwan. Analysis of the semi-structured interviews from 19 PLWH in Taiwan revealed two phases and six themes. Phase one “experiences before disclosure” involved three themes: “Struggles under the pressure of concealing the HIV Status,” “Torn between fear of unemployment/isolation and desire to protect closed ones,” and “Being forced to disclose the HIV status.” Phase two “experiences after disclosure” included three themes: “Receiving special considerations and requirements from school or work,” “Receiving differential treatments in life and when seeking medical care,” and “Stress relief and restart.” Healthcare professionals need to assess stigmatization in PLWH and develop individualized approaches to assist with the disease disclosure process.

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