No Image

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

March 1, 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 1, 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.

February 28, 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.

February 28, 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.

February 28, 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

Medical Marketing in the United States, 1997-2016.

February 28, 2019 dna 0
Icon for Silverchair Information Systems Related Articles

Medical Marketing in the United States, 1997-2016.

JAMA. 2019 Jan 01;321(1):80-96

Authors: Schwartz LM, Woloshin S

Abstract
Importance: Manufacturers, companies, and health care professionals and organizations use an array of promotional activities to sell and increase market share of their products and services. These activities seek to shape public and clinician beliefs about laboratory testing, the benefits and harms of prescription drugs, and some disease definitions.
Objective: To review the marketing of prescription drugs, disease awareness campaigns, health services, and laboratory tests and the related consequences and regulation in the United States over a 20-year period (1997-2016).
Evidence: Analysis (1997-2016) of consumer advertising (Kantar Media data for spending and number of ads); professional marketing (IQVIA Institute for Human Data Science, Open Payments Data [Centers for Medicare & Medicaid Services]); regulations and legal actions of the US Food and Drug Administration (FDA), Federal Trade Commission (FTC), state attorneys general, and US Department of Justice; and searches (1975-2018) of peer-reviewed medical literature (PubMed), business journals (Business Source Ultimate), and news media (Lexis Nexis) for articles about expenditures, content, and consequences and regulation of consumer and professional medical marketing. Spending is reported in 2016 dollars.
Findings: From 1997 through 2016, spending on medical marketing of drugs, disease awareness campaigns, health services, and laboratory testing increased from $17.7 to $29.9 billion. The most rapid increase was in direct-to-consumer (DTC) advertising, which increased from $2.1 billion (11.9%) of total spending in 1997 to $9.6 billion (32.0%) of total spending in 2016. DTC prescription drug advertising increased from $1.3 billion (79 000 ads) to $6 billion (4.6 million ads [including 663 000 TV commercials]), with a shift toward advertising high-cost biologics and cancer immunotherapies. Pharmaceutical companies increased DTC marketing about diseases treated by their drugs with increases in disease awareness campaigns from 44 to 401 and in spending from $177 million to $430 million. DTC advertising for health services increased from $542 million to $2.9 billion, with the largest spending increases by hospitals, dental centers, cancer centers, mental health and addiction clinics, and medical services (eg, home health). DTC spending on advertising for laboratory tests (such as genetic testing) increased from $75.4 million to $82.6 million, although the number of ads increased more substantially (from 14 100 to 255 300), reflecting an increase in less expensive electronic media advertising. Marketing to health care professionals by pharmaceutical companies accounted for most promotional spending and increased from $15.6 billion to $20.3 billion, including $5.6 billion for prescriber detailing, $13.5 billion for free samples, $979 million for direct physician payments (eg, speaking fees, meals) related to specific drugs, and $59 million for disease education. Manufacturers of FDA-approved laboratory tests paid $12.9 million to professionals in 2016. From 1997 through 2016, the number of consumer and professional drug promotional materials that companies submitted for FDA review increased from 34 182 to 97 252, while FDA violation letters for misleading drug marketing decreased from 156 to 11. Since 1997, 103 financial settlements between drug companies and federal and state governments resulted in more than $11 billion in fines for off-label or deceptive marketing practices. The FTC has acted against misleading marketing by a single for-profit cancer center.
Conclusions and Relevance: Medical marketing increased substantially from 1997 through 2016, especially DTC advertising for prescription drugs and health services. Pharmaceutical marketing to health professionals accounted for most spending and remains high even with new policies to limit industry influence. Despite the increase in marketing over 20 years, regulatory oversight remains limited.

PMID: 30620375 [PubMed – indexed for MEDLINE]

No Image

A systematic analysis of online marketing materials used by providers of expanded carrier screening.

February 13, 2019 dna 0
Icon for Nature Publishing Group Related Articles

A systematic analysis of online marketing materials used by providers of expanded carrier screening.

Genet Med. 2018 09;20(9):976-984

Authors: Chokoshvili D, Borry P, Vears DF

Abstract
PURPOSE: Expanded carrier screening (ECS) for a large number of recessive disorders is available to prospective parents through commercial providers. This study aimed to analyze the content of marketing materials on ECS providers’ websites.
METHODS: To identify providers of ECS tests, we undertook a comprehensive online search, reviewed recent academic literature on commercial carrier screening, and consulted with colleagues familiar with the current ECS landscape. The identified websites were archived in April 2017, and inductive content analysis was performed on website text, brochures and educational materials, and video transcripts.
RESULTS: We identified 18 ECS providers, including 16 commercial genetic testing companies. Providers typically described ECS as an important family planning tool. The content differed in both the tone used to promote ECS and the accuracy and completeness of the test information provided. We found that most providers offered complimentary genetic counseling to their consumers, although this was often optional, limited to the posttest context, and, in some cases, appeared to be available only to test-positive individuals.
CONCLUSION: The quality of ECS providers’ websites could be improved by offering more complete and accurate information about ECS and their tests. Providers should also ensure that all carrier couples receive posttest genetic counseling to inform their subsequent reproductive decision making.

PMID: 29240075 [PubMed – indexed for MEDLINE]

No Image

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

February 1, 2019 dna 0
Related Articles

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]

No Image

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

January 31, 2019 dna 0
Related Articles

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]

No Image

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

January 31, 2019 dna 0
Related Articles

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]