Ainsley J Newson
Biographic Data
| ID | 2744257 |
|---|---|
| NAME | Ainsley J Newson |
| GIVEN NAMES | Ainsley J |
| FAMILY NAME | Newson |
| SIGNATURE | NEWSON A J |
| AFFILIATIONS | The University of Sydney |
| ORCID | 0000-0002-3460-772X |
| VERIFIED | Yes |
| TOTAL WORKS | 22 |
| TOTAL CITATIONS | 1 |
| WORKS AS AUTHOR | 22 |
| WORKS AS EDITOR | 0 |
| FIRST PUBLICATION YEAR | 2001 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 1 |
Genomic Data Governance Challenges Between Research and Clinical Care
Information, Access, and Stress
This study explores parents’ perspectives on expanded genomic testing in pregnancy and its implications for reproductive autonomy. We conducted four workshops using dialogue group methodology and involving thirty-three Australian parents with recent experience of pregnancy. Participants used a fictional scenario involving prenatal testing to reflect on their own experiences and views. Four interconnected themes were identified: barriers to autono…
Ethical preparedness in the clinical genomics laboratory
What moral weight should patient‐led demand have in clinical decisions about assisted reproductive technologies
Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as ‘add‐ons’ to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay ‘whatever it ta…
The salience of genomic information to reproductive autonomy
Genomic testing in prenatal care is rapidly advancing and it is now possible to obtain an entire fetal genome via a blood test administered in early pregnancy. In the pursuit of reproductive autonomy, more tests are being offered to more people, for an ever-increasing range of indications. Health professionals who provide pregnancy care are at the vanguard of prenatal testing, yet their views on the impact of technology advancements remain under-…
Is there a duty to routinely reinterpret genomic variant classifications
Multiple studies show that periodic reanalysis of genomic test results held by clinical laboratories delivers significant increases in overall diagnostic yield. However, while there is a widespread consensus that implementing routine reanalysis procedures is highly desirable, there is an equally widespread understanding that routine reanalysis of individual patient results is not presently feasible to perform for all patients. Instead, researcher…
Reconsidering reinterpretation
How should severity be understood in the context of reproductive genetic carrier screening
Reproductive genetic carrier screening provides information about people's chance of having children with certain genetic conditions. Severity of genetic conditions is an important criterion for their inclusion in carrier screening programmes. However, the concept of severity is conceptually complex and underspecified. We analyse why severity is an important concept in carrier screening and for reproductive decision‐making and show that assessmen…
Hope and Exploitation in Commercial Provision of Assisted Reproductive Technologies
Innovation is a key driver of care provision in assisted reproductive technologies (ART). ART providers offer a range of add‐on interventions, aiming to augment standard in vitro fertilization protocols and improve the chances of a live birth. Particularly in the context of commercial provision, an ever‐increasing array of add‐ons are marketed to ART patients, even when evidence to support them is equivocal. A defining feature of ART is hope—hope…
Reproductive carrier screening
Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Conte…
Sharing precision medicine data with private industry
Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private…
‘There is a lot of good in knowing, but there is also a lot of downs’
Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public (n=30) who had re…
The perils of a broad approach to public interest in health data research
The law often calls on the concept of public interest for assistance. Privacy law makes use of this concept in several ways, including to justify consent waivers for secondary research on health information. Because the law sees information privacy as a means for individuals to control their personal information, consent can only be set aside in special circumstances. Ballantyne and Schaefer argue that only public interest, and only a broad conce…
To offer or request? Disclosing variants of uncertain significance in prenatal testing
The use of genomic testing in pregnancy is increasing, giving rise to questions over how the information that is generated should be offered and returned in clinical practice. While these tests provide important information for prenatal decision‐making, they can also generate information of uncertain significance. This paper critically examines three models for approaching the disclosure of variants of uncertain significance (VUS), which can aris…
The expectations and realities of nutrigenomic testing in australia
BACKGROUND: Consumer genomic testing for nutrition and wellness, (nutritional genomics), is becoming increasingly popular. Concurrently, health-care practitioners (HPs) working in private practice (including doctors interested in integrative medicine, private genetic counsellors, pharmacists, dieticians, naturopaths and nutritionists) are involved as test facilitators or interpreters. OBJECTIVE: To explore Australian consumers' and HPs' experienc…
Acceptability of risk‐stratified population screening across cancer types
BACKGROUND: There is mounting evidence of the benefit of risk-stratified (risk-tailored) cancer population screening, when compared to standard approaches. However, shifting towards this approach involves changes to practice that may give rise to implementation challenges. OBJECTIVES: To explore the public's potential acceptance of risk-stratified screening across different cancer types, including reducing screening frequency if at low risk and t…
Obligations and preferences in knowing and not knowing
In healthcare broadly, and especially in genetic (and now genomic) medicine, there is an ongoing debate about whether patients have a right not to know (RNTK) information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable bu…
Implementation considerations for offering personal genomic risk information to the public
Participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable, particularly for common, complex conditions such as cancer. Understanding participants' preferences for receiving genomic risk information will assist with communication strategies and health workforce planning. We anticipate that these findings will contribute to the development of im…
Dynamic Consent
Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC can enhance decisional autonomy and improve researcher-participant communication. Currently, there i…
Public preferences for communicating personal genomic risk information
BACKGROUND: Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies. OBJECTIVE: To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals. DESIGN: Focus groups,…
Postgraduate Forum on Genetics and Society
Postgraduate Forum on Genetics and Society
(2001). Postgraduate Forum on Genetics and Society: Report on the Fourth Colloquium. New Genetics and Society: Vol. 20, No. 1, pp. 69-73
Sharing precision medicine data with private industry
Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private…
Postgraduate Forum on Genetics and Society
Postgraduate Forum on Genetics and Society
(2001). Postgraduate Forum on Genetics and Society: Report on the Fourth Colloquium. New Genetics and Society: Vol. 20, No. 1, pp. 69-73
Public preferences for communicating personal genomic risk information
BACKGROUND: Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies. OBJECTIVE: To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals. DESIGN: Focus groups,…
Dynamic Consent
Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC can enhance decisional autonomy and improve researcher-participant communication. Currently, there i…
Obligations and preferences in knowing and not knowing
In healthcare broadly, and especially in genetic (and now genomic) medicine, there is an ongoing debate about whether patients have a right not to know (RNTK) information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable bu…
Implementation considerations for offering personal genomic risk information to the public
Participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable, particularly for common, complex conditions such as cancer. Understanding participants' preferences for receiving genomic risk information will assist with communication strategies and health workforce planning. We anticipate that these findings will contribute to the development of im…
‘There is a lot of good in knowing, but there is also a lot of downs’
Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public (n=30) who had re…
The perils of a broad approach to public interest in health data research
The law often calls on the concept of public interest for assistance. Privacy law makes use of this concept in several ways, including to justify consent waivers for secondary research on health information. Because the law sees information privacy as a means for individuals to control their personal information, consent can only be set aside in special circumstances. Ballantyne and Schaefer argue that only public interest, and only a broad conce…
To offer or request? Disclosing variants of uncertain significance in prenatal testing
The use of genomic testing in pregnancy is increasing, giving rise to questions over how the information that is generated should be offered and returned in clinical practice. While these tests provide important information for prenatal decision‐making, they can also generate information of uncertain significance. This paper critically examines three models for approaching the disclosure of variants of uncertain significance (VUS), which can aris…
The expectations and realities of nutrigenomic testing in australia
BACKGROUND: Consumer genomic testing for nutrition and wellness, (nutritional genomics), is becoming increasingly popular. Concurrently, health-care practitioners (HPs) working in private practice (including doctors interested in integrative medicine, private genetic counsellors, pharmacists, dieticians, naturopaths and nutritionists) are involved as test facilitators or interpreters. OBJECTIVE: To explore Australian consumers' and HPs' experienc…
Acceptability of risk‐stratified population screening across cancer types
BACKGROUND: There is mounting evidence of the benefit of risk-stratified (risk-tailored) cancer population screening, when compared to standard approaches. However, shifting towards this approach involves changes to practice that may give rise to implementation challenges. OBJECTIVES: To explore the public's potential acceptance of risk-stratified screening across different cancer types, including reducing screening frequency if at low risk and t…
Reproductive carrier screening
Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Conte…
Sharing precision medicine data with private industry
Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private…
Is there a duty to routinely reinterpret genomic variant classifications
Multiple studies show that periodic reanalysis of genomic test results held by clinical laboratories delivers significant increases in overall diagnostic yield. However, while there is a widespread consensus that implementing routine reanalysis procedures is highly desirable, there is an equally widespread understanding that routine reanalysis of individual patient results is not presently feasible to perform for all patients. Instead, researcher…
Reconsidering reinterpretation
How should severity be understood in the context of reproductive genetic carrier screening
Reproductive genetic carrier screening provides information about people's chance of having children with certain genetic conditions. Severity of genetic conditions is an important criterion for their inclusion in carrier screening programmes. However, the concept of severity is conceptually complex and underspecified. We analyse why severity is an important concept in carrier screening and for reproductive decision‐making and show that assessmen…
Hope and Exploitation in Commercial Provision of Assisted Reproductive Technologies
Innovation is a key driver of care provision in assisted reproductive technologies (ART). ART providers offer a range of add‐on interventions, aiming to augment standard in vitro fertilization protocols and improve the chances of a live birth. Particularly in the context of commercial provision, an ever‐increasing array of add‐ons are marketed to ART patients, even when evidence to support them is equivocal. A defining feature of ART is hope—hope…
Ethical preparedness in the clinical genomics laboratory
What moral weight should patient‐led demand have in clinical decisions about assisted reproductive technologies
Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as ‘add‐ons’ to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay ‘whatever it ta…
The salience of genomic information to reproductive autonomy
Genomic testing in prenatal care is rapidly advancing and it is now possible to obtain an entire fetal genome via a blood test administered in early pregnancy. In the pursuit of reproductive autonomy, more tests are being offered to more people, for an ever-increasing range of indications. Health professionals who provide pregnancy care are at the vanguard of prenatal testing, yet their views on the impact of technology advancements remain under-…
Genomic Data Governance Challenges Between Research and Clinical Care
Information, Access, and Stress
This study explores parents’ perspectives on expanded genomic testing in pregnancy and its implications for reproductive autonomy. We conducted four workshops using dialogue group methodology and involving thirty-three Australian parents with recent experience of pregnancy. Participants used a fictional scenario involving prenatal testing to reflect on their own experiences and views. Four interconnected themes were identified: barriers to autono…
Political science (14 works) · Computer Science (13 works) · Medicine (11 works) · Ethics in Clinical Research (9 works) · Psychology (8 works) · Biology (7 works) · BRCA gene mutations in cancer (7 works) · Law (7 works) · Sociology (7 works) · Autonomy (5 works)