The Experts below are selected from a list of 24756 Experts worldwide ranked by ideXlab platform

Yann Joly - One of the best experts on this subject based on the ideXlab platform.

  • Establishing the International Genetic Discrimination Observatory.
    Nature genetics, 2020
    Co-Authors: Yann Joly, Gratien Dalpé, Charles Dupras, Bénédicte Bévière-boyer, Aisling De Paor, Edward S. Dove, Palmira Granados Moreno, Katharina Ó Cathaoir
    Abstract:

    Genetic Discrimination is one of the most pervasive challenges resulting from research and development in human Genetics. To collaboratively study and prevent this ethical issue, we established an international Genetic Discrimination Observatory comprising a network of researchers and stakeholders from more than 19 jurisdictions.

  • Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination.
    Annual review of genomics and human genetics, 2020
    Co-Authors: Yann Joly, Charles Dupras, Miriam Pinkesz, Stacey A. Tovino, Mark A. Rothstein
    Abstract:

    Concerns about Genetic Discrimination (GD) often surface when discussing research and innovation in Genetics. Over recent decades, countries around the world have attempted to address GD using vari...

  • EpiGenetic Discrimination: Emerging Applications of EpiGenetics Pointing to the Limitations of Policies Against Genetic Discrimination.
    Frontiers in genetics, 2018
    Co-Authors: Charles Dupras, Lingqiao Song, Katie M. Saulnier, Yann Joly
    Abstract:

    Over more than two decades, various policies have been adopted worldwide to restrict the use of individual Genetic information for non-medical reasons by third parties and prevent ‘Genetic Discrimination’. In this paper, we bring attention to the growing interest of individual epiGenetic information by insurers and forensic scientists. We question whether such interest could lead to ‘epiGenetic Discrimination’ – the differential adverse treatment or abusive profiling of individuals or groups based on their actual or presumed epiGenetic characteristics – and argue that we might already be facing the limitations of recently adopted normative approaches against Genetic Discrimination. First, we highlight some similarities and differences between Genetic and epiGenetic modifications, and stress potential challenges to regulating epiGenetic Discrimination. Second, we argue that most existing normative approaches against Genetic Discrimination fall short in providing oversight into the field of epiGenetics. We conclude with a call for discussion on the issue, and the development of comprehensive and forward looking preventive strategies against epiGenetic Discrimination.

  • Comparative Approaches to Genetic Discrimination: Chasing Shadows?
    Trends in genetics : TIG, 2017
    Co-Authors: Yann Joly, Ida Ngueng Feze, Lingqiao Song, Bartha Maria Knoppers
    Abstract:

    Genetic Discrimination (GD) is one of the most pervasive issues associated with Genetic research and its large-scale implementation. An increasing number of countries have adopted public policies to address this issue. Our research presents a worldwide comparative review and typology of these approaches. We conclude with suggestions for public policy development.

  • Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?
    2017
    Co-Authors: Yann Joly, Ida Ngueng Feze, Lingqiao Song, Bartha Maria Knoppers
    Abstract:

    Genetic Discrimination is one of the most pervasive issues associated with Genetic research and its large-scale implementation in developed countries. In the past decades, governments of an increasing number of countries have adopted public policies to protect their populations from Genetic Discrimination. Our research presents a comparative review of laws and policies addressing Genetic Discrimination worldwide. It provides a concise typology and critical appraisal of existing normative approaches. After analyzing these documents and regrouping them under eight policy approaches, our article concludes by formulating some suggestions for future development public policy development.

Margaret Otlowski - One of the best experts on this subject based on the ideXlab platform.

  • Genetic Discrimination by australian insurance companies a survey of consumer experiences
    European Journal of Human Genetics, 2020
    Co-Authors: Jane Tiller, Margaret Otlowski, Susan Morris, Toni Rice, Krystal Barter, Moeen Riaz, Louise Keogh, Martin B Delatycki, Paul Lacaze
    Abstract:

    We report previously undocumented evidence of Genetic Discrimination by Australian insurance companies, obtained through direct consumer reports. We surveyed 174 consumers with cancer-predisposing variants, recruited by cancer organisations Lynch Syndrome Australia and Pink Hope. Questions related to experiences accessing risk-rated insurance after Genetic testing. Results indicate that both legal (permitted under current regulation) and illegal Discrimination is occurring. Although some respondents had not applied for risk-rated insurance, or had insurance in place before Genetic testing (n = 100), those seeking new policies (n = 74) commonly experienced difficulties obtaining insurance (86%, 64/74). Of those experiencing difficulties, 50% (32/64) had no prior history or symptoms of cancer, and had undertaken risk reduction through surveillance and/or preventative surgery. Seventy-seven percent (49/64) reported difficulties related to life insurance. Follow-up telephone interviews with four respondents further described cases of apparent illegal breaches. All reports of Discrimination identified were, to our knowledge, previously unreported in the literature. The number of cases suggests a systemic problem with the Australian life insurance industry. We support calls for government oversight of the inherently conflicted model of industry self-regulation in Australia, and an immediate ban on the use of Genetic test results in insurance underwriting.

  • Genetic Discrimination: International Perspectives
    Annual review of genomics and human genetics, 2012
    Co-Authors: Margaret Otlowski, Sandra Taylor, Yvonne Bombard
    Abstract:

    Genetic Discrimination (GD) is a complex, multifaceted ethical, psychosocial, and legal phenomenon. It is defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed Genetic characteristics. This article presents an overview of GD within the contemporary international context. It describes the concept of GD and its contextual features, reviews research evidence regarding people's experiences of GD and the impact of GD within a range of domains, and provides an overview of legal and policy responses to GD that have emerged globally. We argue that GD is a significant and internationally established phenomenon that requires multilevel responses to ensure social justice and equitable outcomes for all citizens. Future research should monitor GD and its impacts within the community as well as institutions and should evaluate the effectiveness of legislative, policy, community education, and systemic responses.

  • Verification of consumers' experiences and perceptions of Genetic Discrimination and its impact on utilization of Genetic testing.
    Genetics in medicine : official journal of the American College of Medical Genetics, 2009
    Co-Authors: Kristine Barlow-stewart, Sandra Taylor, Susan A. Treloar, Mark Stranger, Margaret Otlowski
    Abstract:

    Purpose: To undertake a systematic process of verification of consumer accounts of alleged Genetic Discrimination. Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of Genetic Discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical. Results: Reported incidents of Genetic Discrimination were verified in life insurance access, underwriting and coercion (9), applications for worker's compensation (1) and early release from prison (1) and in two cases of fear of Discrimination impacting on access to Genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by Genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers. Conclusion: These first cases of verified Genetic Discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of Genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions.

  • Investigating Genetic Discrimination in Australia: a large-scale survey of clinical Genetics clients.
    Clinical genetics, 2008
    Co-Authors: Sandra Taylor, Kristine Barlow-stewart, Susan A. Treloar, Mja Stranger, Margaret Otlowski
    Abstract:

    We report first results from the Australian Genetic Discrimination Project of clinical Genetics services clients' perceptions and experiences regarding alleged differential treatment associated with having Genetic information. Adults (n = 2667) who had presented from 1998 to 2003 regarding predictive or presymptomatic testing for designated mature-onset conditions were surveyed; 951/1185 respondents met inclusion criteria for current asymptomatic status. Neurological conditions and familial cancers were primary relevant conditions for 87% of asymptomatic respondents. Specific incidents of alleged negative treatment, reported by 10% (n = 93) of respondents, occurred in life insurance (42%), employment (5%), family (22%), social (11%) and health (20%) domains. Respondents where neuro-degenerative conditions were relevant were more likely overall to report incidents and significantly more likely to report incidents in the social domain. Most incidents in the post-test period occurred in the first year after testing. Only 15% of respondents knew where to complain officially if treated negatively because of Genetics issues. Recommendations include the need for increased community and clinical education regarding Genetic Discrimination, for extended clinical Genetics sector engagement and for co-ordinated monitoring, research and policy development at national levels in order for the full benefits of Genetic testing technology to be realised.

  • Verification of Consumers' Experiences and Perceptions of Genetic Discrimination and its Impact on Utilisation of Genetic Testing
    2008
    Co-Authors: Kristine Barlow-stewart, Sandra Taylor, Susan A. Treloar, Mark Stranger, Margaret Otlowski
    Abstract:

    Purpose: To undertake a systematic process of verification of consumer accounts of alleged Genetic Discrimination. Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of Genetic Discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical. Results: Reported incidents of Genetic Discrimination were verified in life insurance access, underwriting and coercion (9), applications for worker’s compensation (1) and early release from prison (1) and in two cases of fear of Discrimination impacting on access to Genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by Genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers. Conclusion: These first cases of verified Genetic Discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of Genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions. Genet Med 2009:11(3):193–201.

Sandra Taylor - One of the best experts on this subject based on the ideXlab platform.

  • Genetic Discrimination: International Perspectives
    Annual review of genomics and human genetics, 2012
    Co-Authors: Margaret Otlowski, Sandra Taylor, Yvonne Bombard
    Abstract:

    Genetic Discrimination (GD) is a complex, multifaceted ethical, psychosocial, and legal phenomenon. It is defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed Genetic characteristics. This article presents an overview of GD within the contemporary international context. It describes the concept of GD and its contextual features, reviews research evidence regarding people's experiences of GD and the impact of GD within a range of domains, and provides an overview of legal and policy responses to GD that have emerged globally. We argue that GD is a significant and internationally established phenomenon that requires multilevel responses to ensure social justice and equitable outcomes for all citizens. Future research should monitor GD and its impacts within the community as well as institutions and should evaluate the effectiveness of legislative, policy, community education, and systemic responses.

  • Perception, experience, and response to Genetic Discrimination in Huntington disease: the international RESPOND-HD study.
    American journal of medical genetics. Part B Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, 2010
    Co-Authors: Cheryl Erwin, Yvonne Bombard, Michael R. Hayden, Janet K. Williams, Andrew R. Juhl, Michelle Mengeling, James A Mills, Kimberly Quaid, Ira Shoulson, Sandra Taylor
    Abstract:

    Genetic Discrimination-defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on Genetic information (including family history)-is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causes HD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report Genetic Discrimination or stigma based on either their family history of HD or Genetic testing for the HD gene mutation. We report on the overall incidence of Discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self-reported Discrimination is less than the overall worry about the risk of Discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived Genetic Discrimination in the areas of health insurance and employment, compared to the perception of Discrimination and stigma in personal relationships, the cumulative burden of Genetic Discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown.

  • In their own words: reports of stigma and Genetic Discrimination by people at risk for Huntington disease in the International RESPOND-HD study.
    American journal of medical genetics. Part B Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, 2010
    Co-Authors: Janet K. Williams, Sandra Taylor, Yvonne Bombard, Michael R. Hayden, Cheryl Erwin, Andrew R. Juhl, Michelle Mengeling, Kimberly Quaid, Ira Shoulson, Jane S. Paulsen
    Abstract:

    Genetic Discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At-risk individuals who have tested either positive or negative for the Genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of Genetic stigmatization and Discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing Genetic Discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of Genetic Discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.

  • Verification of consumers' experiences and perceptions of Genetic Discrimination and its impact on utilization of Genetic testing.
    Genetics in medicine : official journal of the American College of Medical Genetics, 2009
    Co-Authors: Kristine Barlow-stewart, Sandra Taylor, Susan A. Treloar, Mark Stranger, Margaret Otlowski
    Abstract:

    Purpose: To undertake a systematic process of verification of consumer accounts of alleged Genetic Discrimination. Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of Genetic Discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical. Results: Reported incidents of Genetic Discrimination were verified in life insurance access, underwriting and coercion (9), applications for worker's compensation (1) and early release from prison (1) and in two cases of fear of Discrimination impacting on access to Genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by Genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers. Conclusion: These first cases of verified Genetic Discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of Genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions.

  • Investigating Genetic Discrimination in Australia: a large-scale survey of clinical Genetics clients.
    Clinical genetics, 2008
    Co-Authors: Sandra Taylor, Kristine Barlow-stewart, Susan A. Treloar, Mja Stranger, Margaret Otlowski
    Abstract:

    We report first results from the Australian Genetic Discrimination Project of clinical Genetics services clients' perceptions and experiences regarding alleged differential treatment associated with having Genetic information. Adults (n = 2667) who had presented from 1998 to 2003 regarding predictive or presymptomatic testing for designated mature-onset conditions were surveyed; 951/1185 respondents met inclusion criteria for current asymptomatic status. Neurological conditions and familial cancers were primary relevant conditions for 87% of asymptomatic respondents. Specific incidents of alleged negative treatment, reported by 10% (n = 93) of respondents, occurred in life insurance (42%), employment (5%), family (22%), social (11%) and health (20%) domains. Respondents where neuro-degenerative conditions were relevant were more likely overall to report incidents and significantly more likely to report incidents in the social domain. Most incidents in the post-test period occurred in the first year after testing. Only 15% of respondents knew where to complain officially if treated negatively because of Genetics issues. Recommendations include the need for increased community and clinical education regarding Genetic Discrimination, for extended clinical Genetics sector engagement and for co-ordinated monitoring, research and policy development at national levels in order for the full benefits of Genetic testing technology to be realised.

Ira Shoulson - One of the best experts on this subject based on the ideXlab platform.

  • Perception, experience, and response to Genetic Discrimination in Huntington disease: the international RESPOND-HD study.
    American journal of medical genetics. Part B Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, 2010
    Co-Authors: Cheryl Erwin, Yvonne Bombard, Michael R. Hayden, Janet K. Williams, Andrew R. Juhl, Michelle Mengeling, James A Mills, Kimberly Quaid, Ira Shoulson, Sandra Taylor
    Abstract:

    Genetic Discrimination-defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on Genetic information (including family history)-is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causes HD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report Genetic Discrimination or stigma based on either their family history of HD or Genetic testing for the HD gene mutation. We report on the overall incidence of Discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self-reported Discrimination is less than the overall worry about the risk of Discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived Genetic Discrimination in the areas of health insurance and employment, compared to the perception of Discrimination and stigma in personal relationships, the cumulative burden of Genetic Discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown.

  • In their own words: reports of stigma and Genetic Discrimination by people at risk for Huntington disease in the International RESPOND-HD study.
    American journal of medical genetics. Part B Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, 2010
    Co-Authors: Janet K. Williams, Sandra Taylor, Yvonne Bombard, Michael R. Hayden, Cheryl Erwin, Andrew R. Juhl, Michelle Mengeling, Kimberly Quaid, Ira Shoulson, Jane S. Paulsen
    Abstract:

    Genetic Discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At-risk individuals who have tested either positive or negative for the Genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of Genetic stigmatization and Discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing Genetic Discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of Genetic Discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.

  • Preempting Genetic Discrimination and assaults on privacy: report of a symposium.
    American journal of medical genetics. Part A, 2003
    Co-Authors: Aileen Shinaman, Lisa J Bain, Ira Shoulson
    Abstract:

    At a symposium in June, 2002, biomedical researchers, clinicians, legal experts, policymakers, and representatives of the insurance industry and the advocacy community gathered to address issues of Genetic privacy and Discrimination; and to identify research, legal, and policy gaps needing to be filled. They concluded that over the next decade, as more Genetic information becomes available and the public becomes more aware of individual risks, concerns about privacy and Discrimination will become increasingly important. Documented cases of Genetic Discrimination are rare and largely anecdotal, yet individuals with Genetic conditions harbor significant fears about Discrimination. Current laws enacted to protect individuals from workplace and insurance Discrimination offer some measure of protection, but leave many unfilled gaps. Moreover, the use of Genetic information in potentially discriminatory ways is not limited to employment and insurability. Existing laws do little to protect people seeking life, disability, or long-term care insurance. And the courts have used Genetic information in a wide variety of cases including paternity, criminal, and tort (personal injury) cases. Genetic information that might jeopardize an individual's right to privacy may also be obtained in the course of research studies, including through the collection of DNA and tissue samples. The insurance industry, State and Federal agencies, and the advocacy community are all making efforts to address some of these gaps through legislation and education of clinicians, the public, and policy makers.

  • Preempting Genetic Discrimination and assaults on privacy: Report of a symposium
    American Journal of Medical Genetics Part A, 2003
    Co-Authors: Aileen Shinaman, Lisa J Bain, Ira Shoulson
    Abstract:

    At a symposium in June, 2002, biomedical researchers, clinicians, legal experts, policymakers, and representatives of the insurance industry and the advocacy community gathered to address issues of Genetic privacy and Discrimination; and to identify research, legal, and policy gaps needing to be filled. They concluded that over the next decade, as more Genetic information becomes available and the public becomes more aware of individual risks, concerns about privacy and Discrimination will become increasingly important. Documented cases of Genetic Discrimination are rare and largely anecdotal, yet individuals with Genetic conditions harbor significant fears about Discrimination. Current laws enacted to protect individuals from workplace and insurance Discrimination offer some measure of protection, but leave many unfilled gaps. Moreover, the use of Genetic information in potentially discriminatory ways is not limited to employment and insurability. Existing laws do little to protect people seeking life, disability, or long-term care insurance. And the courts have used Genetic information in a wide variety of cases including paternity, criminal, and tort (personal injury) cases. Genetic information that might jeopardize an individual's right to privacy may also be obtained in the course of research studies, including through the collection of DNA and tissue samples. The insurance industry, State and Federal agencies, and the advocacy community are all making efforts to address some of these gaps through legislation and education of clinicians, the public, and policy makers. © 2003 Wiley-Liss, Inc.

Kristine Barlow-stewart - One of the best experts on this subject based on the ideXlab platform.

  • Verification of consumers' experiences and perceptions of Genetic Discrimination and its impact on utilization of Genetic testing.
    Genetics in medicine : official journal of the American College of Medical Genetics, 2009
    Co-Authors: Kristine Barlow-stewart, Sandra Taylor, Susan A. Treloar, Mark Stranger, Margaret Otlowski
    Abstract:

    Purpose: To undertake a systematic process of verification of consumer accounts of alleged Genetic Discrimination. Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of Genetic Discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical. Results: Reported incidents of Genetic Discrimination were verified in life insurance access, underwriting and coercion (9), applications for worker's compensation (1) and early release from prison (1) and in two cases of fear of Discrimination impacting on access to Genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by Genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers. Conclusion: These first cases of verified Genetic Discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of Genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions.

  • Investigating Genetic Discrimination in Australia: a large-scale survey of clinical Genetics clients.
    Clinical genetics, 2008
    Co-Authors: Sandra Taylor, Kristine Barlow-stewart, Susan A. Treloar, Mja Stranger, Margaret Otlowski
    Abstract:

    We report first results from the Australian Genetic Discrimination Project of clinical Genetics services clients' perceptions and experiences regarding alleged differential treatment associated with having Genetic information. Adults (n = 2667) who had presented from 1998 to 2003 regarding predictive or presymptomatic testing for designated mature-onset conditions were surveyed; 951/1185 respondents met inclusion criteria for current asymptomatic status. Neurological conditions and familial cancers were primary relevant conditions for 87% of asymptomatic respondents. Specific incidents of alleged negative treatment, reported by 10% (n = 93) of respondents, occurred in life insurance (42%), employment (5%), family (22%), social (11%) and health (20%) domains. Respondents where neuro-degenerative conditions were relevant were more likely overall to report incidents and significantly more likely to report incidents in the social domain. Most incidents in the post-test period occurred in the first year after testing. Only 15% of respondents knew where to complain officially if treated negatively because of Genetics issues. Recommendations include the need for increased community and clinical education regarding Genetic Discrimination, for extended clinical Genetics sector engagement and for co-ordinated monitoring, research and policy development at national levels in order for the full benefits of Genetic testing technology to be realised.

  • Verification of Consumers' Experiences and Perceptions of Genetic Discrimination and its Impact on Utilisation of Genetic Testing
    2008
    Co-Authors: Kristine Barlow-stewart, Sandra Taylor, Susan A. Treloar, Mark Stranger, Margaret Otlowski
    Abstract:

    Purpose: To undertake a systematic process of verification of consumer accounts of alleged Genetic Discrimination. Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of Genetic Discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical. Results: Reported incidents of Genetic Discrimination were verified in life insurance access, underwriting and coercion (9), applications for worker’s compensation (1) and early release from prison (1) and in two cases of fear of Discrimination impacting on access to Genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by Genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers. Conclusion: These first cases of verified Genetic Discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of Genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions. Genet Med 2009:11(3):193–201.

  • The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study:
    International Journal of Discrimination and the Law, 2007
    Co-Authors: Margaret Otlowski, Sandra Taylor, Kristine Barlow-stewart, Mark Stranger, Susan A. Treloar
    Abstract:

    Differential treatment on the basis of Genetic status (Genetic Discrimination), has become an issue of international concern. The Genetic Discrimination Project (GDP) is an Australia-wide study which has empirically examined the nonmedical/health advantages and disadvantages for individuals who have gained specific information about their Genetic status (typically through Genetic testing). A major component of this project has been the Legal System Study which investigated and documented all cases involving allegations of Genetic Discrimination coming before anti-Discrimination tribunals and other relevant bodies in Australia. Another major component of the project, the Consumer Study, investigated allegations of Genetic Discrimination from consumers of Genetic tests. While the study identified a relatively small number of cases where allegations of Genetic Discrimination have been pursued under Australian anti-Discrimination legislation, a key finding was the notable lack of uptake of legal remedies by those who may have experienced such Discrimination. This paper explores possible factors contributing to this lack of uptake and makes recommendations to facilitate access to legal remedies by those who may have been subject to unlawful Genetic Discrimination.

  • Investigating Genetic Discrimination in Australia: Perceptions and experiences of Clinical Genetics Service clients regarding coercion to test, insurance and employment
    2007
    Co-Authors: Otlowski, Sandra Taylor, Kristine Barlow-stewart, Mja Stranger, Susan A. Treloar
    Abstract:

    Survey and interview-based findings from the Consumer Study of the Australian Genetic Discrimination Project (GDP) are reported. These involve perceptions and experiences of clinical Genetics clients regarding coercion to undertake Genetic testing and insurance and employment-related issues. Genetic Discrimination is defined as the differential treatment of asymptomatic individuals because of actual or presumed Genetic differences. Eligible adults (n=2667) who had requested predictive testing for designated mature-onset conditions, 1998 to 2003, were surveyed; 951/1185 respondents met asymptomatic inclusion criteria. Neurological disorders and familial cancers were relevant to the majority. Sources of coercion, where reported, included family members, doctors, Geneticists/counsellors and life insurers. Insurance and employment related issues were raised; some respondents reported avoiding or being advised not to apply for life insurance. Interview data further elucidate context and impact of coercion and/or negative treatment. The experiences of respondents where neurological conditions were relevant differed from others. Implications of the study are discussed.