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Alzheimer’s Disease – Perspective from Political Science: Public Policy Issues.

March 26, 2020 dna 0
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Alzheimer’s Disease – Perspective from Political Science: Public Policy Issues.

J Law Med Ethics. 2018 Sep;46(3):724-743

Authors: Blank RH

Abstract
The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders.

PMID: 30336108 [PubMed – indexed for MEDLINE]

No Image

Alzheimer’s Disease – Perspective from Political Science: Public Policy Issues.

March 26, 2020 dna 0
Icon for Atypon Related Articles

Alzheimer’s Disease – Perspective from Political Science: Public Policy Issues.

J Law Med Ethics. 2018 Sep;46(3):724-743

Authors: Blank RH

Abstract
The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders.

PMID: 30336108 [PubMed – indexed for MEDLINE]

No Image

Alzheimer’s Disease – Perspective from Political Science: Public Policy Issues.

March 25, 2020 dna 0
Icon for Atypon Related Articles

Alzheimer’s Disease – Perspective from Political Science: Public Policy Issues.

J Law Med Ethics. 2018 Sep;46(3):724-743

Authors: Blank RH

Abstract
The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders.

PMID: 30336108 [PubMed – indexed for MEDLINE]

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Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

March 25, 2020 dna 0
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Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

Am J Hum Genet. 2019 07 03;105(1):122-131

Authors: Nelson SC, Bowen DJ, Fullerton SM

Abstract
In an effort to meet ethical obligations and/or participant expectations, researchers may consider offering “raw” or uninterpreted genetic data for result return. It is therefore important to understand the motivations, behaviors, and perspectives of individuals who might choose to access raw data before such return becomes routine. In the direct-to-consumer (DTC) context, where raw data are often made available to customers, the use of third-party interpretation tools has raised concerns about genotype accuracy, data privacy, reliability of interpretation, and consumption of limited health care resources. However, relatively little is known about why individuals access raw data or what they do with the information received from third-party interpretation. Accordingly, we conducted a survey on raw data access and third-party tool usage among 1,137 DTC customers recruited through social media. Most survey respondents (89%) reported downloading their raw data. Among downloaders, 94% used at least one tool, most commonly Promethease (63%) or GEDmatch (84%). More than half (56%) used both health-related and non-health-related tools and differed significantly from those who used only one tool type in terms of demographics, participation in research, DTC tests ordered, and testing motivations. Exploratory interviews were conducted with 10 respondents and illustrated how social networking, initial lack of interesting findings, and general curiosity contributed to use of multiple tool types. These results suggest that even when initially motivated by ancestry and genealogy, consumers frequently also pursue health information in a largely unregulated and expanding suite of third-party tools, raising both challenges and opportunities for the professional genetics community.

PMID: 31204012 [PubMed – indexed for MEDLINE]

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

March 25, 2020 dna 0
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‘It’s much more grey than black and white’: clinical geneticists’ views on the oversight of consumer genomics in Europe.

Per Med. 2020 Mar 10;:

Authors: Kalokairinou L, Borry P, Howard HC

Abstract
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.

PMID: 32154757 [PubMed – as supplied by publisher]

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

March 24, 2020 dna 0
Related Articles

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

Per Med. 2020 Mar 10;:

Authors: Kalokairinou L, Borry P, Howard HC

Abstract
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.

PMID: 32154757 [PubMed – as supplied by publisher]

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

March 24, 2020 dna 0
Related Articles

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

Per Med. 2020 Mar 10;:

Authors: Kalokairinou L, Borry P, Howard HC

Abstract
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.

PMID: 32154757 [PubMed – as supplied by publisher]

No Image

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

March 23, 2020 dna 0
Related Articles

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

Per Med. 2020 Mar 10;:

Authors: Kalokairinou L, Borry P, Howard HC

Abstract
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.

PMID: 32154757 [PubMed – as supplied by publisher]

No Image

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

March 23, 2020 dna 0
Related Articles

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

Per Med. 2020 Mar 10;:

Authors: Kalokairinou L, Borry P, Howard HC

Abstract
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.

PMID: 32154757 [PubMed – as supplied by publisher]

No Image

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

March 23, 2020 dna 0
Related Articles

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

Per Med. 2020 Mar 10;:

Authors: Kalokairinou L, Borry P, Howard HC

Abstract
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.

PMID: 32154757 [PubMed – as supplied by publisher]