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Directed to consumer genetic testing. Perspective from the Ethics commission of the Spanish Society for Human Genetics.

April 1, 2019 dna 0
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Directed to consumer genetic testing. Perspective from the Ethics commission of the Spanish Society for Human Genetics.

Med Clin (Barc). 2019 Mar 18;:

Authors: Pàmpols Ros T, García Sagredo JM, Pérez Aytés A, Díaz de Bustamante A

PMID: 30898448 [PubMed – as supplied by publisher]

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Recent developments in genetic/genomic medicine.

March 22, 2019 dna 0
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Recent developments in genetic/genomic medicine.

Clin Sci (Lond). 2019 Mar 15;133(5):697-708

Authors: Horton RH, Lucassen AM

Abstract
Advances in genetic technology are having a major impact in the clinic, and mean that many perceptions of the role and scope of genetic testing are having to change. Genomic testing brings with it a greater opportunity for diagnosis, or predictions of future diagnoses, but also an increased chance of uncertain or unexpected findings, many of which may have impacts for multiple members of a person’s family. In the past, genetic testing was rarely able to provide rapid results, but the increasing speed and availability of genomic testing is changing this, meaning that genomic information is increasingly influencing decisions around patient care in the acute inpatient setting. The landscape of treatment options for genetic conditions is shifting, which has evolving implications for clinical discussions around previously untreatable disorders. Furthermore, the point of access to testing is changing with increasing provision direct to the consumer outside the formal healthcare setting. This review outlines the ways in which genetic medicine is developing in light of technological advances.

PMID: 30837331 [PubMed – in process]

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The social life of DNA: racial reconciliation and institutional morality after the genome.

March 22, 2019 dna 0
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The social life of DNA: racial reconciliation and institutional morality after the genome.

Br J Sociol. 2018 Sep;69(3):522-537

Authors: Nelson A

Abstract
This 2017 British Journal of Sociology Lecture builds upon ideas developed in The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome (Nelson 2016). I argue that one of the more significant developments of the postgenomic era is the circulation of DNA analysis outside of the life sciences, especially commercial applications such as direct-to-consumer genealogical testing. These tests are increasingly taken up in ‘reconciliation projects’ – endeavours in which DNA analysis is put to the use of repairing the past, including a recently launched attempt in the United States to locate descendants of enslaved persons sold by the Jesuit stewards of Georgetown College in order to bolster that institution’s finances. With this reconciliation project, genetic genealogy has become a vehicle for a form of social repair, and most particularly, the reuniting of ‘lost’ kin. This use of genetic genealogy takes place against the backdrop of an expanding, national inquiry into ties between education and slavery. In the process, the legacy of racial slavery is rendered both contemporary and proximate, despite a ‘colour-blind’ racial project that aims to negate the significance of this history and its coeval development with US higher education. Elite educational institutions such as Georgetown that elect to excavate these histories are soon after faced with the choice of how to respond, on campus and beyond, to revelations of entanglements between edification and bondage. However imperfectly, colleges and universities are among the few institutional settings where the contested issue of structural racism (and remedies to it) may be aired. It is in these fraught debates that the exercise of ‘institutional morality’ can take shape; organizations engage in practices that articulate institutional values and are faced with a choice of symbolic and distributional responses.

PMID: 30328106 [PubMed – indexed for MEDLINE]

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Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 6, 2019 dna 0
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Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]

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Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 6, 2019 dna 0
Icon for Nature Publishing Group Icon for PubMed Central Related Articles

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]

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Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 5, 2019 dna 0
Icon for Nature Publishing Group Icon for PubMed Central Related Articles

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]

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Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 5, 2019 dna 0
Icon for Nature Publishing Group Icon for PubMed Central Related Articles

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]

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Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 5, 2019 dna 0
Icon for Nature Publishing Group Icon for PubMed Central Related Articles

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]

No Image

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 5, 2019 dna 0
Icon for Nature Publishing Group Icon for PubMed Central Related Articles

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]

No Image

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

March 5, 2019 dna 0
Icon for Nature Publishing Group Icon for PubMed Central Related Articles

Australians’ views on personal genomic testing: focus group findings from the Genioz study.

Eur J Hum Genet. 2018 08;26(8):1101-1112

Authors: Metcalfe SA, Hickerton C, Savard J, Terrill B, Turbitt E, Gaff C, Gray K, Middleton A, Wilson B, Newson AJ

Abstract
Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what “personal genomics” might entail. Very few had heard of the term “direct-to-consumer” testing, which has implications for organisations developing information to support individuals in their decision-making. Participants’ understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

PMID: 29706641 [PubMed – indexed for MEDLINE]