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A recently published study on public attitudes towards genomic data sharing has highlighted issues around whether and how people are willing to share their DNA information.1 The study is the largest global study of its kind, and it showed that many populations of people are unwilling to share DNA or genomic information and have issues with how this information is shared, who can use it and whether it can be used for commercial purposes.1 This research highlights many issues that will have to be addressed in Aotearoa New Zealand, including how the use of genomic information in a healthcare context will garner the trust of the population to ensure that genomic technologies are used effectively and equitably. In concert with recent worldwide developments in healthcare-data access, where it is becoming more common for genomic information about individual persons to be linked to their healthcare records, the study raises an important and contemporary question: In Aotearoa New Zealand, do we know how we are going to responsibly and sensitively utilise the DNA information of our citizens in a healthcare setting? What sociocultural licence currently exists to support the implementation of a framework that allows access to the DNA information of our citizens for healthcare purposes?

In 2018, it became possible for Australia to link the genomic information of its citizens to their health records using the My Health Record system. However, as reported in the Sydney Morning Herald, appropriate consultation and governance are not currently in place: “Bruce Arnold, a privacy expert at University of Canberra, raised concerns about the uploading of genomic data onto My Health Records, saying: ‘It’s outrageous. Why didn’t we know about this? The lack of information only fosters fear and distrust.’”2 Concern around the misuse of DNA information is not unfounded, as improper use of, or access to, such data can promote mistrust of health providers and contribute to inequity in health outcomes.3 In reference to an indigenous context with significant relevance to Aotearoa New Zealand, Hudson and colleagues recently stated that “Numerous research projects, genomic or otherwise, exhibit enduring negative effects on Indigenous Peoples, minority populations or socially disadvantaged groups owing to under-representation, lack of informed consent, lack of consultation, misinterpretation and/or misuse of samples and data.” These authors call for “Transparency about the origins and provenance of genomic data, the ways in which the genomic data are accessed and used, and how benefits are generated and distributed equitably are central to maintaining a high level of integrity within the research enterprise.”4 Untoward repercussions surrounding the misuse of genomic information have already been observed in Aotearoa New Zealand. Take the negative publicity associated with press releases focused on the identification of the ‘warrior gene’. This involved a case of unethical research and racial profiling whereby race-based behaviour (aggression in Māori men) was linked to a certain gene (MAO-A) .5 Now, a US-based direct-to-consumer company has made commercial gains by developing a product that tests for the warrior gene. Unless we consider, anticipate and address the potential for harm associated with the misuse of DNA information, there is the potential for similar adverse events to occur.

What are the considerations for people having their DNA information available to clinicians or researchers and linked to their health records? In essence, people who undergo some form of DNA testing need to know what their DNA information may be used for and that their data is protected, safe and will not lead to personal harm.4,6 In addition, healthcare practitioners need to be aware that genomic data sharing will need to be considered as part of the informed consent process. As an example, at an operational level for a general practitioner, there will need to be appropriate and considered policy and practice to adequately inform patients about how DNA information may be used.3,7 For example, who is to be provided information about their family members?8 How will their family history be collated?9 For individual healthcare providers, such systems will likely change patient management, and it is possible that healthcare practitioners could be expected to be aware of new diseases or health variants that are discovered and relate these to patients on a case-by-case basis. Certainly the expectations of patient populations in their exchanges with healthcare professionals will need to be taken into account if DNA-linked healthcare records become a reality. Currently, it is not clear what these expectations are.

There have been, and continue to be, several initiatives that explore the impact of genomic technologies on both society and healthcare in Aotearoa New Zealand. The Human Genome Research Project, funded by the New Zealand Law Foundation, was one of the first large-scale investigations into the impact of genetic technology.3 Subsequent explorations in this space have included the Ministry of Health and National Health Committee initiative The Introduction of Fit-for-Purpose Omics-based Technologies, which operated as a ‘think-piece’ on the introduction of omics-based technology in Aotearoa New Zealand. More recently, the Ministry of Business Innovation and Employment-funded Genomics Aotearoa infrastructure has been established, and the Genomics Aotearoa Rakeiora programme recently received significant funding to assist the achievement of outcomes including, among other things, “Data [that are] linkable and protected with careful governance and approval to primary and secondary care health data and National Health Datasets.”10 This is in conjunction with other complementary aims of the Genomics Aotearoa Rakeiora programme, including developing frameworks that specifically identify and cater for Māori interests in regard to genomic data acquisition and use for health benefits. However, although local funding and research initiatives point to an increase in research momentum and a recognition of the importance of this topic, there remains a lack of empirically derived data that could assist with a way forward in establishing precisely how local people and their whānau wish to see their genetic information being used in a healthcare context.

While DNA-linked health records are not yet a reality in Aotearoa New Zealand, it is expected that they will be at some point in the near future. There are many benefits to having such a system, including non-clinical use of DNA information by researchers and pharmaceutical companies to assist in the development of more efficacious therapeutics and to improve our understanding of both health and disease.6 With technologies such as pharmacogenomic testing being currently available, this will certainly push the agenda forward, whether we—the public and healthcare professionals of Aotearoa New Zealand—are ready or not. In the meantime, it is up to health agencies to continue to establish what sociocultural licence exists for using genomic healthcare information within the Aotearoa New Zealand population, in order to understand how genomic medicine can be equitably integrated into healthcare practice (ie, within the framework of Whakamaua: Māori Health Action Plan 2020–2025).11 In supporting such data use, we require discussion around how we think about clinical data ownership, including perhaps whether individuals also need or expect financial compensation as a consequence of sharing their genetic information.12,13 At present, it is not clear whether there is sufficient information surrounding local sociocultural licence to safely implement wider access to DNA or genomic healthcare records. Such information is desperately required to appropriately inform the implementation of DNA data sharing, so that healthcare is respectful, culturally safe and relevant.14–17 As recent global and other New Zealand data have indicated, when DNA data sharing becomes more prevalent, that information places the trust-based relationship between the healthcare system, healthcare providers and patients in some level of jeopardy.

Summary

Abstract

Aim

Method

Results

Conclusion

Author Information

Sara K Filoche: Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand. Jon Cornwall: Centre for Early Learning in Medicine, University of Otago, Dunedin, New Zealand.

Acknowledgements

Correspondence

Dr Sara K Filoche: Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand, 04 918 6888

Correspondence Email

sara.filoche@otago.ac.nz

Competing Interests

Nil.

1. Middleton A, Milne R, Almarri MA, Anwer S, Atutornu J, Baranova EE, et al. Global public perceptions of genomic data sharing: What shapes the willingness to donate DNA and health data? The American Journal of Human Genetics. 2020;107(4):743-52.

2. Genome Web. Genomics in the records. https://www.genomeweb.com/scan/genomics-records#.X40AfNAzaUk. Accessed 20 September, 2020.

3. Hill G. Pharmacogenetics: A Review of the ethical, Social and Policy Implications of ‘Personalised Medicine’. In: Genes, Society, and the Future. Volume 3. Henaghan M (ed). 2009.

4. Hudson M, Garrison NA, Sterling R, Caron NR, Fox K, Yracheta J, et al. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews Genetics. 2020;21(6):377-84.

5. Crampton P, Parkin C. Warrior genes and risk-taking science. The New Zealand Medical Journal. 2007;120(1250):U2439.

6. Middleton A. Society and personal genome data. Human Molecular Genetics. 2018;27(R1):R8-R13.

7. Badzek L, Henaghan M, Turner M, Monsen R. Ethical, legal, and social issues in the translation of genomics into health care. Journal of Nursing Scholarship. 2013;45(1):15-24.

8. Dheensa S, Fenwick A, Lucassen A. Approaching confidentiality at a familial level in genomic medicine: A focus group study with healthcare professionals. BMJ Open. 2017;7(2):e012443.

9. The Royal Australian College of General Practitioners. Genomics in general practice. East Melbourne, Victoria RACGP, 2020.

10. Genomics Aotearoa. https://www.genomics-aotearoa.org.nz/projects/rakeiora-pathfinder-genomic-medicine/rakeiora-announcement. Accessed 11 December, 2020.

11. Ministry of Health. Whakamaua: Māori Health Action Plan 2020–2025. Wellington: Ministry of Health; 2020.

12. Ballantyne A. How should we think about clinical data ownership? Journal of Medical Ethics. 2020:medethics-2018-105340.

13. Briscoe F, Ajunwa I, Gaddis A, McCormick J. Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey. PloS one. 2020;15(3):e0229044.

14. Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, et al. Indigenous genomic databases: Pragmatic considerations and cultural contexts. Frontiers in Public Health. 2020;8:111.

15. Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, et al. Te Mata Ira: Guidelines for genomic research with Māori. Māori and Indigenous Governance Centre, University of Waikato; 2016.

16. Cornwall J, Slatter T, Print C, Guilford P, Henaghan M, Wee R. Culture, law, ethics, and social implications: Is society ready for advanced genomic medicine? Australasian Medical Journal. 2014;7(4):200-202.

17. Jenkins K. ‘Can I see your social licence please?’ Policy Quarterly. 2018;14(4):27-35.

Contact diana@nzma.org.nz
for the PDF of this article

View Article PDF

A recently published study on public attitudes towards genomic data sharing has highlighted issues around whether and how people are willing to share their DNA information.1 The study is the largest global study of its kind, and it showed that many populations of people are unwilling to share DNA or genomic information and have issues with how this information is shared, who can use it and whether it can be used for commercial purposes.1 This research highlights many issues that will have to be addressed in Aotearoa New Zealand, including how the use of genomic information in a healthcare context will garner the trust of the population to ensure that genomic technologies are used effectively and equitably. In concert with recent worldwide developments in healthcare-data access, where it is becoming more common for genomic information about individual persons to be linked to their healthcare records, the study raises an important and contemporary question: In Aotearoa New Zealand, do we know how we are going to responsibly and sensitively utilise the DNA information of our citizens in a healthcare setting? What sociocultural licence currently exists to support the implementation of a framework that allows access to the DNA information of our citizens for healthcare purposes?

In 2018, it became possible for Australia to link the genomic information of its citizens to their health records using the My Health Record system. However, as reported in the Sydney Morning Herald, appropriate consultation and governance are not currently in place: “Bruce Arnold, a privacy expert at University of Canberra, raised concerns about the uploading of genomic data onto My Health Records, saying: ‘It’s outrageous. Why didn’t we know about this? The lack of information only fosters fear and distrust.’”2 Concern around the misuse of DNA information is not unfounded, as improper use of, or access to, such data can promote mistrust of health providers and contribute to inequity in health outcomes.3 In reference to an indigenous context with significant relevance to Aotearoa New Zealand, Hudson and colleagues recently stated that “Numerous research projects, genomic or otherwise, exhibit enduring negative effects on Indigenous Peoples, minority populations or socially disadvantaged groups owing to under-representation, lack of informed consent, lack of consultation, misinterpretation and/or misuse of samples and data.” These authors call for “Transparency about the origins and provenance of genomic data, the ways in which the genomic data are accessed and used, and how benefits are generated and distributed equitably are central to maintaining a high level of integrity within the research enterprise.”4 Untoward repercussions surrounding the misuse of genomic information have already been observed in Aotearoa New Zealand. Take the negative publicity associated with press releases focused on the identification of the ‘warrior gene’. This involved a case of unethical research and racial profiling whereby race-based behaviour (aggression in Māori men) was linked to a certain gene (MAO-A) .5 Now, a US-based direct-to-consumer company has made commercial gains by developing a product that tests for the warrior gene. Unless we consider, anticipate and address the potential for harm associated with the misuse of DNA information, there is the potential for similar adverse events to occur.

What are the considerations for people having their DNA information available to clinicians or researchers and linked to their health records? In essence, people who undergo some form of DNA testing need to know what their DNA information may be used for and that their data is protected, safe and will not lead to personal harm.4,6 In addition, healthcare practitioners need to be aware that genomic data sharing will need to be considered as part of the informed consent process. As an example, at an operational level for a general practitioner, there will need to be appropriate and considered policy and practice to adequately inform patients about how DNA information may be used.3,7 For example, who is to be provided information about their family members?8 How will their family history be collated?9 For individual healthcare providers, such systems will likely change patient management, and it is possible that healthcare practitioners could be expected to be aware of new diseases or health variants that are discovered and relate these to patients on a case-by-case basis. Certainly the expectations of patient populations in their exchanges with healthcare professionals will need to be taken into account if DNA-linked healthcare records become a reality. Currently, it is not clear what these expectations are.

There have been, and continue to be, several initiatives that explore the impact of genomic technologies on both society and healthcare in Aotearoa New Zealand. The Human Genome Research Project, funded by the New Zealand Law Foundation, was one of the first large-scale investigations into the impact of genetic technology.3 Subsequent explorations in this space have included the Ministry of Health and National Health Committee initiative The Introduction of Fit-for-Purpose Omics-based Technologies, which operated as a ‘think-piece’ on the introduction of omics-based technology in Aotearoa New Zealand. More recently, the Ministry of Business Innovation and Employment-funded Genomics Aotearoa infrastructure has been established, and the Genomics Aotearoa Rakeiora programme recently received significant funding to assist the achievement of outcomes including, among other things, “Data [that are] linkable and protected with careful governance and approval to primary and secondary care health data and National Health Datasets.”10 This is in conjunction with other complementary aims of the Genomics Aotearoa Rakeiora programme, including developing frameworks that specifically identify and cater for Māori interests in regard to genomic data acquisition and use for health benefits. However, although local funding and research initiatives point to an increase in research momentum and a recognition of the importance of this topic, there remains a lack of empirically derived data that could assist with a way forward in establishing precisely how local people and their whānau wish to see their genetic information being used in a healthcare context.

While DNA-linked health records are not yet a reality in Aotearoa New Zealand, it is expected that they will be at some point in the near future. There are many benefits to having such a system, including non-clinical use of DNA information by researchers and pharmaceutical companies to assist in the development of more efficacious therapeutics and to improve our understanding of both health and disease.6 With technologies such as pharmacogenomic testing being currently available, this will certainly push the agenda forward, whether we—the public and healthcare professionals of Aotearoa New Zealand—are ready or not. In the meantime, it is up to health agencies to continue to establish what sociocultural licence exists for using genomic healthcare information within the Aotearoa New Zealand population, in order to understand how genomic medicine can be equitably integrated into healthcare practice (ie, within the framework of Whakamaua: Māori Health Action Plan 2020–2025).11 In supporting such data use, we require discussion around how we think about clinical data ownership, including perhaps whether individuals also need or expect financial compensation as a consequence of sharing their genetic information.12,13 At present, it is not clear whether there is sufficient information surrounding local sociocultural licence to safely implement wider access to DNA or genomic healthcare records. Such information is desperately required to appropriately inform the implementation of DNA data sharing, so that healthcare is respectful, culturally safe and relevant.14–17 As recent global and other New Zealand data have indicated, when DNA data sharing becomes more prevalent, that information places the trust-based relationship between the healthcare system, healthcare providers and patients in some level of jeopardy.

Summary

Abstract

Aim

Method

Results

Conclusion

Author Information

Sara K Filoche: Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand. Jon Cornwall: Centre for Early Learning in Medicine, University of Otago, Dunedin, New Zealand.

Acknowledgements

Correspondence

Dr Sara K Filoche: Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand, 04 918 6888

Correspondence Email

sara.filoche@otago.ac.nz

Competing Interests

Nil.

1. Middleton A, Milne R, Almarri MA, Anwer S, Atutornu J, Baranova EE, et al. Global public perceptions of genomic data sharing: What shapes the willingness to donate DNA and health data? The American Journal of Human Genetics. 2020;107(4):743-52.

2. Genome Web. Genomics in the records. https://www.genomeweb.com/scan/genomics-records#.X40AfNAzaUk. Accessed 20 September, 2020.

3. Hill G. Pharmacogenetics: A Review of the ethical, Social and Policy Implications of ‘Personalised Medicine’. In: Genes, Society, and the Future. Volume 3. Henaghan M (ed). 2009.

4. Hudson M, Garrison NA, Sterling R, Caron NR, Fox K, Yracheta J, et al. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews Genetics. 2020;21(6):377-84.

5. Crampton P, Parkin C. Warrior genes and risk-taking science. The New Zealand Medical Journal. 2007;120(1250):U2439.

6. Middleton A. Society and personal genome data. Human Molecular Genetics. 2018;27(R1):R8-R13.

7. Badzek L, Henaghan M, Turner M, Monsen R. Ethical, legal, and social issues in the translation of genomics into health care. Journal of Nursing Scholarship. 2013;45(1):15-24.

8. Dheensa S, Fenwick A, Lucassen A. Approaching confidentiality at a familial level in genomic medicine: A focus group study with healthcare professionals. BMJ Open. 2017;7(2):e012443.

9. The Royal Australian College of General Practitioners. Genomics in general practice. East Melbourne, Victoria RACGP, 2020.

10. Genomics Aotearoa. https://www.genomics-aotearoa.org.nz/projects/rakeiora-pathfinder-genomic-medicine/rakeiora-announcement. Accessed 11 December, 2020.

11. Ministry of Health. Whakamaua: Māori Health Action Plan 2020–2025. Wellington: Ministry of Health; 2020.

12. Ballantyne A. How should we think about clinical data ownership? Journal of Medical Ethics. 2020:medethics-2018-105340.

13. Briscoe F, Ajunwa I, Gaddis A, McCormick J. Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey. PloS one. 2020;15(3):e0229044.

14. Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, et al. Indigenous genomic databases: Pragmatic considerations and cultural contexts. Frontiers in Public Health. 2020;8:111.

15. Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, et al. Te Mata Ira: Guidelines for genomic research with Māori. Māori and Indigenous Governance Centre, University of Waikato; 2016.

16. Cornwall J, Slatter T, Print C, Guilford P, Henaghan M, Wee R. Culture, law, ethics, and social implications: Is society ready for advanced genomic medicine? Australasian Medical Journal. 2014;7(4):200-202.

17. Jenkins K. ‘Can I see your social licence please?’ Policy Quarterly. 2018;14(4):27-35.

Contact diana@nzma.org.nz
for the PDF of this article

View Article PDF

A recently published study on public attitudes towards genomic data sharing has highlighted issues around whether and how people are willing to share their DNA information.1 The study is the largest global study of its kind, and it showed that many populations of people are unwilling to share DNA or genomic information and have issues with how this information is shared, who can use it and whether it can be used for commercial purposes.1 This research highlights many issues that will have to be addressed in Aotearoa New Zealand, including how the use of genomic information in a healthcare context will garner the trust of the population to ensure that genomic technologies are used effectively and equitably. In concert with recent worldwide developments in healthcare-data access, where it is becoming more common for genomic information about individual persons to be linked to their healthcare records, the study raises an important and contemporary question: In Aotearoa New Zealand, do we know how we are going to responsibly and sensitively utilise the DNA information of our citizens in a healthcare setting? What sociocultural licence currently exists to support the implementation of a framework that allows access to the DNA information of our citizens for healthcare purposes?

In 2018, it became possible for Australia to link the genomic information of its citizens to their health records using the My Health Record system. However, as reported in the Sydney Morning Herald, appropriate consultation and governance are not currently in place: “Bruce Arnold, a privacy expert at University of Canberra, raised concerns about the uploading of genomic data onto My Health Records, saying: ‘It’s outrageous. Why didn’t we know about this? The lack of information only fosters fear and distrust.’”2 Concern around the misuse of DNA information is not unfounded, as improper use of, or access to, such data can promote mistrust of health providers and contribute to inequity in health outcomes.3 In reference to an indigenous context with significant relevance to Aotearoa New Zealand, Hudson and colleagues recently stated that “Numerous research projects, genomic or otherwise, exhibit enduring negative effects on Indigenous Peoples, minority populations or socially disadvantaged groups owing to under-representation, lack of informed consent, lack of consultation, misinterpretation and/or misuse of samples and data.” These authors call for “Transparency about the origins and provenance of genomic data, the ways in which the genomic data are accessed and used, and how benefits are generated and distributed equitably are central to maintaining a high level of integrity within the research enterprise.”4 Untoward repercussions surrounding the misuse of genomic information have already been observed in Aotearoa New Zealand. Take the negative publicity associated with press releases focused on the identification of the ‘warrior gene’. This involved a case of unethical research and racial profiling whereby race-based behaviour (aggression in Māori men) was linked to a certain gene (MAO-A) .5 Now, a US-based direct-to-consumer company has made commercial gains by developing a product that tests for the warrior gene. Unless we consider, anticipate and address the potential for harm associated with the misuse of DNA information, there is the potential for similar adverse events to occur.

What are the considerations for people having their DNA information available to clinicians or researchers and linked to their health records? In essence, people who undergo some form of DNA testing need to know what their DNA information may be used for and that their data is protected, safe and will not lead to personal harm.4,6 In addition, healthcare practitioners need to be aware that genomic data sharing will need to be considered as part of the informed consent process. As an example, at an operational level for a general practitioner, there will need to be appropriate and considered policy and practice to adequately inform patients about how DNA information may be used.3,7 For example, who is to be provided information about their family members?8 How will their family history be collated?9 For individual healthcare providers, such systems will likely change patient management, and it is possible that healthcare practitioners could be expected to be aware of new diseases or health variants that are discovered and relate these to patients on a case-by-case basis. Certainly the expectations of patient populations in their exchanges with healthcare professionals will need to be taken into account if DNA-linked healthcare records become a reality. Currently, it is not clear what these expectations are.

There have been, and continue to be, several initiatives that explore the impact of genomic technologies on both society and healthcare in Aotearoa New Zealand. The Human Genome Research Project, funded by the New Zealand Law Foundation, was one of the first large-scale investigations into the impact of genetic technology.3 Subsequent explorations in this space have included the Ministry of Health and National Health Committee initiative The Introduction of Fit-for-Purpose Omics-based Technologies, which operated as a ‘think-piece’ on the introduction of omics-based technology in Aotearoa New Zealand. More recently, the Ministry of Business Innovation and Employment-funded Genomics Aotearoa infrastructure has been established, and the Genomics Aotearoa Rakeiora programme recently received significant funding to assist the achievement of outcomes including, among other things, “Data [that are] linkable and protected with careful governance and approval to primary and secondary care health data and National Health Datasets.”10 This is in conjunction with other complementary aims of the Genomics Aotearoa Rakeiora programme, including developing frameworks that specifically identify and cater for Māori interests in regard to genomic data acquisition and use for health benefits. However, although local funding and research initiatives point to an increase in research momentum and a recognition of the importance of this topic, there remains a lack of empirically derived data that could assist with a way forward in establishing precisely how local people and their whānau wish to see their genetic information being used in a healthcare context.

While DNA-linked health records are not yet a reality in Aotearoa New Zealand, it is expected that they will be at some point in the near future. There are many benefits to having such a system, including non-clinical use of DNA information by researchers and pharmaceutical companies to assist in the development of more efficacious therapeutics and to improve our understanding of both health and disease.6 With technologies such as pharmacogenomic testing being currently available, this will certainly push the agenda forward, whether we—the public and healthcare professionals of Aotearoa New Zealand—are ready or not. In the meantime, it is up to health agencies to continue to establish what sociocultural licence exists for using genomic healthcare information within the Aotearoa New Zealand population, in order to understand how genomic medicine can be equitably integrated into healthcare practice (ie, within the framework of Whakamaua: Māori Health Action Plan 2020–2025).11 In supporting such data use, we require discussion around how we think about clinical data ownership, including perhaps whether individuals also need or expect financial compensation as a consequence of sharing their genetic information.12,13 At present, it is not clear whether there is sufficient information surrounding local sociocultural licence to safely implement wider access to DNA or genomic healthcare records. Such information is desperately required to appropriately inform the implementation of DNA data sharing, so that healthcare is respectful, culturally safe and relevant.14–17 As recent global and other New Zealand data have indicated, when DNA data sharing becomes more prevalent, that information places the trust-based relationship between the healthcare system, healthcare providers and patients in some level of jeopardy.

Summary

Abstract

Aim

Method

Results

Conclusion

Author Information

Sara K Filoche: Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand. Jon Cornwall: Centre for Early Learning in Medicine, University of Otago, Dunedin, New Zealand.

Acknowledgements

Correspondence

Dr Sara K Filoche: Department of Obstetrics, Gynaecology and Women’s Health and Department of Pathology and Molecular Medicine, University of Otago Wellington, New Zealand, 04 918 6888

Correspondence Email

sara.filoche@otago.ac.nz

Competing Interests

Nil.

1. Middleton A, Milne R, Almarri MA, Anwer S, Atutornu J, Baranova EE, et al. Global public perceptions of genomic data sharing: What shapes the willingness to donate DNA and health data? The American Journal of Human Genetics. 2020;107(4):743-52.

2. Genome Web. Genomics in the records. https://www.genomeweb.com/scan/genomics-records#.X40AfNAzaUk. Accessed 20 September, 2020.

3. Hill G. Pharmacogenetics: A Review of the ethical, Social and Policy Implications of ‘Personalised Medicine’. In: Genes, Society, and the Future. Volume 3. Henaghan M (ed). 2009.

4. Hudson M, Garrison NA, Sterling R, Caron NR, Fox K, Yracheta J, et al. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews Genetics. 2020;21(6):377-84.

5. Crampton P, Parkin C. Warrior genes and risk-taking science. The New Zealand Medical Journal. 2007;120(1250):U2439.

6. Middleton A. Society and personal genome data. Human Molecular Genetics. 2018;27(R1):R8-R13.

7. Badzek L, Henaghan M, Turner M, Monsen R. Ethical, legal, and social issues in the translation of genomics into health care. Journal of Nursing Scholarship. 2013;45(1):15-24.

8. Dheensa S, Fenwick A, Lucassen A. Approaching confidentiality at a familial level in genomic medicine: A focus group study with healthcare professionals. BMJ Open. 2017;7(2):e012443.

9. The Royal Australian College of General Practitioners. Genomics in general practice. East Melbourne, Victoria RACGP, 2020.

10. Genomics Aotearoa. https://www.genomics-aotearoa.org.nz/projects/rakeiora-pathfinder-genomic-medicine/rakeiora-announcement. Accessed 11 December, 2020.

11. Ministry of Health. Whakamaua: Māori Health Action Plan 2020–2025. Wellington: Ministry of Health; 2020.

12. Ballantyne A. How should we think about clinical data ownership? Journal of Medical Ethics. 2020:medethics-2018-105340.

13. Briscoe F, Ajunwa I, Gaddis A, McCormick J. Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey. PloS one. 2020;15(3):e0229044.

14. Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, et al. Indigenous genomic databases: Pragmatic considerations and cultural contexts. Frontiers in Public Health. 2020;8:111.

15. Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, et al. Te Mata Ira: Guidelines for genomic research with Māori. Māori and Indigenous Governance Centre, University of Waikato; 2016.

16. Cornwall J, Slatter T, Print C, Guilford P, Henaghan M, Wee R. Culture, law, ethics, and social implications: Is society ready for advanced genomic medicine? Australasian Medical Journal. 2014;7(4):200-202.

17. Jenkins K. ‘Can I see your social licence please?’ Policy Quarterly. 2018;14(4):27-35.

Contact diana@nzma.org.nz
for the PDF of this article

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