Nina Hallowell
Biographic Data
| ID | 250502 |
|---|---|
| NAME | Nina Hallowell |
| GIVEN NAMES | Nina |
| FAMILY NAME | Hallowell |
| SIGNATURE | HALLOWELL N |
| AFFILIATIONS | University of Oxford |
| ORCID | 0000-0002-7647-8524 |
| VERIFIED | Yes |
| TOTAL WORKS | 27 |
| TOTAL CITATIONS | 200 |
| AUTHOR COUNT | 27 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 1997 |
| LATEST PUBLICATION YEAR | 2024 |
| H-INDEX | 7 |
Ethical preparedness in genomic medicine: How NHS clinical scientists navigate ethical issues
Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such a…
Inalienable data: Ethical imaginaries of de-identified health data ownership
Many legal, ethical, and regulatory frameworks allow de-identified health data to be shared for research without patients’ opt-in consent. However, there may be public concerns about this practice, as people may feel they should have some say in how such data is used. This paper introduces the concept of the “inalienability of de-identified data,” to describe a key assumption underlying that public concern and preference. The assumption, derived …
Democratising or disrupting diagnosis? Ethical issues raised by the use of AI tools for rare disease diagnosis
Computational phenotyping (CP) technology uses facial recognition algorithms to classify and potentially diagnose rare genetic disorders on the basis of digitised facial images. This AI technology has a number of research as well as clinical applications, such as supporting diagnostic decision-making. Using the example of CP, we examine stakeholders' views of the benefits and costs of using AI as a diagnostic tool within the clinic. Through a ser…
Taking it to the bank: The ethical management of individual findings arising in secondary research
A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined …
Eating to live or living to eat: The meaning of hunger following gastric surgery
This paper is based upon interviews with twenty-seven women and men who have an inherited risk of developing gastric cancer and have had their stomach removed as a preventative measure. We describe what happens when bodily processes – digestion - are disrupted by the removal of the stomach. Interviewees' who had undergone prophylactic total gastrectomy experienced changes to the lived experience of hunger and appetite. The interviewees' accounts …
Digital/computational phenotyping: What are the differences in the science and the ethics
The concept of 'digital phenotyping' was originally developed by researchers in the mental health field, but it has travelled to other disciplines and areas. This commentary draws upon our experiences of working in two scientific projects that are based at the University of Oxford's Big Data Institute - The RADAR-AD project and The Minerva Initiative - which are developing algorithmic phenotyping technologies. We describe and analyse the concepts…
How Should Decision Aids Be Used During Counseling to Help Patients Who Are “Genetically at Risk”
People with genetic predispositions to disease are faced with uncertainty about whether, when, and to what extent an illness will actually develop. This prognostic uncertainty, combined with knowledge that preventative interventions (eg, risk-reducing surgeries for familial cancer syndromes) could significantly affect people's lives, renders prevention decisions especially challenging. This article illuminates ethical questions about the use of d…
Negotiating jurisdictional boundaries in response to new genetic possibilities in breast cancer care: The creation of an ‘oncogenetic taskscape
I would like to discuss it further with an expert”: A focus group study of Finnish adults’ perspectives on genetic secondary findings
A qualitative study of patients’ perceptions of the value of molecular diagnosis for familial hypercholesterolemia (FH)
Timing and context: Important considerations in the return of genetic results to research participants
Rehabilitating the sick role: The Experiences of High-Risk Women Who Undergo Risk Reducing Breast Surgery
In recent years, Talcott Parsons’ work has come under renewed scrutiny by sociologists who argue that his concept of the sick role has a role to play in current accounts of health and illness. In this paper we describe the ways in which Australian women who had undergone elective risk-reducing breast surgery (with or without ovarian surgery) spoke about their convalescence. Women presented two contrasting recovery narratives in describing their e…
Inter-embodiment and the experience of genetic testing for familial hypercholesterolaemia
In this article we explore the concept of inter-embodiment and its potential for advancing sociological research into illness biography and genetic identity. Inter-embodiment theory views embodied knowledge as produced through relations between bodies, as opposed to originating from within the body or as the product of relations between disembodied selves. Drawing on a qualitative study in which we interviewed 38 individuals about their experienc…
Understanding the outcomes of multi-centre clinical trials: A qualitative study of health professional experiences and views
Patients' experiences and views of cascade screening for familial hypercholesterolemia (FH): A qualitative study
Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies
We should change ourselves, but we can't’: Accounts of food and eating practices amongst British Pakistanis and Indians with type 2 diabetes
Perceptions that South Asian foodstuffs necessarily comprise 'risky' options need to be tackled amongst patients and possibly their healthcare providers. To enable Indians and Pakistanis to manage their diabetes and identity simultaneously, guidelines should promote changes which work with their current food practices and preferences; specifically through lower fat recipes for commonly consumed dishes. Information and advice should be targeted at…
Contextualising accounts of illness: Notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation
We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsib…
‘I can't do any serious exercise’: Barriers to physical activity amongst people of Pakistani and Indian origin with Type 2 diabetes
Type 2 diabetes is at least 4 times more common among British South Asians than in the general population. South Asians also have a higher risk of diabetic complications, a situation which has been linked to low levels of physical activity observed amongst this group. Little is known about the factors and considerations which prohibit and/or facilitate physical activity amongst South Asians. This qualitative study explored Pakistani (n = 23) and …
Risky Relations. Family, Kinship and the New Genetics by Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A.
Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A. Risky Relations. Family, Kinship and the New Genetics . Oxford : Berg , 2006 £16.50 (pbk) 176pp . ISBN 1-84520-179-5 . Despite a large number of projects which have looked at lay experiences of genetic medicine and countless published papers on individuals’ experiences of predictive and prenatal testing and the publics’ understanding of genetics, little has been written about individual…
Varieties of suffering: Living with the risk of ovarian cancer
Risk is a defining feature of late modernity. While it is acknowledged that risk has come to mean danger, the sociological literature suggests that risk is becoming abstracted from reality and presents it as lacking emotional content. This paper argues that the lived experiences of risk should no longer be overlooked. Using data collected in a qualitative interview study of women who have a family history of ovarian cancer, it demonstrates that w…
Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family
Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations …
Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer
Negotiating Present and Future Selves: Managing the Risk of Hereditary Ovarian Cancer by Prophylactic Surgery
Women who are at increased risk of developing ovarian cancer because of their family history are encouraged to make decisions about the medical management of their cancer risk. Using data collected during interviews with 49 high-risk premenopausal women, this article looks at some of the influences on women’s risk-management choices. When describing their attitudes about preventative ovarian surgery, high-risk women draw upon discourses of contro…
Advising on the management of genetic risk: Offering choice or prescribing action
The aim of genetic counselling is to provide information about individuals' genetic risks, the available risk management options and the costs and benefits of genetic testing in both a neutral and non-directive manner. This paper reports the findings of a prospective study of genetic counselling for hereditary breast/ovarian cancer. It argues that genetic counselling for these types of cancer is not neutral, but can be seen as both overtly and co…
Doing the right thing: Genetic Risk and Responsibility
This paper reports the findings of an interview study of women (n = 40) attending genetic counselling for hereditary breast/ovarian cancer (HBOC). The analysis indicates that women who attend genetics clinics perceive themselves as having a responsibility to their kin (past, present and future generations) to establish the magnitude of their risk and the risks to other family members, and to act upon this information by engaging in some form of r…
Contextualising accounts of illness: Notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation
We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsib…
Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family
Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations …
Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies
We should change ourselves, but we can't’: Accounts of food and eating practices amongst British Pakistanis and Indians with type 2 diabetes
Perceptions that South Asian foodstuffs necessarily comprise 'risky' options need to be tackled amongst patients and possibly their healthcare providers. To enable Indians and Pakistanis to manage their diabetes and identity simultaneously, guidelines should promote changes which work with their current food practices and preferences; specifically through lower fat recipes for commonly consumed dishes. Information and advice should be targeted at…
Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer
Varieties of suffering: Living with the risk of ovarian cancer
Risk is a defining feature of late modernity. While it is acknowledged that risk has come to mean danger, the sociological literature suggests that risk is becoming abstracted from reality and presents it as lacking emotional content. This paper argues that the lived experiences of risk should no longer be overlooked. Using data collected in a qualitative interview study of women who have a family history of ovarian cancer, it demonstrates that w…
Inter-embodiment and the experience of genetic testing for familial hypercholesterolaemia
In this article we explore the concept of inter-embodiment and its potential for advancing sociological research into illness biography and genetic identity. Inter-embodiment theory views embodied knowledge as produced through relations between bodies, as opposed to originating from within the body or as the product of relations between disembodied selves. Drawing on a qualitative study in which we interviewed 38 individuals about their experienc…
Understanding Life's Lottery: An Evaluation of Studies of Genetic Risk Awareness
This article reviews studies of risk awareness of carriers of genetic disorders and individuals who attend genetic counselling. It focuses upon investigations of recall of risk estimates following counselling. Six factors are discussed which may influence individuals' recall of genetic risk estimates. These include: mode of genetic transmission, counsellees' reproductive behaviour or intentions, time delay between counselling and data collection,…
Negotiating Present and Future Selves: Managing the Risk of Hereditary Ovarian Cancer by Prophylactic Surgery
Women who are at increased risk of developing ovarian cancer because of their family history are encouraged to make decisions about the medical management of their cancer risk. Using data collected during interviews with 49 high-risk premenopausal women, this article looks at some of the influences on women’s risk-management choices. When describing their attitudes about preventative ovarian surgery, high-risk women draw upon discourses of contro…
Negotiating jurisdictional boundaries in response to new genetic possibilities in breast cancer care: The creation of an ‘oncogenetic taskscape
Rehabilitating the sick role: The Experiences of High-Risk Women Who Undergo Risk Reducing Breast Surgery
In recent years, Talcott Parsons’ work has come under renewed scrutiny by sociologists who argue that his concept of the sick role has a role to play in current accounts of health and illness. In this paper we describe the ways in which Australian women who had undergone elective risk-reducing breast surgery (with or without ovarian surgery) spoke about their convalescence. Women presented two contrasting recovery narratives in describing their e…
Understanding the outcomes of multi-centre clinical trials: A qualitative study of health professional experiences and views
Digital/computational phenotyping: What are the differences in the science and the ethics
The concept of 'digital phenotyping' was originally developed by researchers in the mental health field, but it has travelled to other disciplines and areas. This commentary draws upon our experiences of working in two scientific projects that are based at the University of Oxford's Big Data Institute - The RADAR-AD project and The Minerva Initiative - which are developing algorithmic phenotyping technologies. We describe and analyse the concepts…
Understanding Life's Lottery: An Evaluation of Studies of Genetic Risk Awareness
This article reviews studies of risk awareness of carriers of genetic disorders and individuals who attend genetic counselling. It focuses upon investigations of recall of risk estimates following counselling. Six factors are discussed which may influence individuals' recall of genetic risk estimates. These include: mode of genetic transmission, counsellees' reproductive behaviour or intentions, time delay between counselling and data collection,…
Advising on the management of genetic risk: Offering choice or prescribing action
The aim of genetic counselling is to provide information about individuals' genetic risks, the available risk management options and the costs and benefits of genetic testing in both a neutral and non-directive manner. This paper reports the findings of a prospective study of genetic counselling for hereditary breast/ovarian cancer. It argues that genetic counselling for these types of cancer is not neutral, but can be seen as both overtly and co…
Doing the right thing: Genetic Risk and Responsibility
This paper reports the findings of an interview study of women (n = 40) attending genetic counselling for hereditary breast/ovarian cancer (HBOC). The analysis indicates that women who attend genetics clinics perceive themselves as having a responsibility to their kin (past, present and future generations) to establish the magnitude of their risk and the risks to other family members, and to act upon this information by engaging in some form of r…
Negotiating Present and Future Selves: Managing the Risk of Hereditary Ovarian Cancer by Prophylactic Surgery
Women who are at increased risk of developing ovarian cancer because of their family history are encouraged to make decisions about the medical management of their cancer risk. Using data collected during interviews with 49 high-risk premenopausal women, this article looks at some of the influences on women’s risk-management choices. When describing their attitudes about preventative ovarian surgery, high-risk women draw upon discourses of contro…
Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer
‘I can't do any serious exercise’: Barriers to physical activity amongst people of Pakistani and Indian origin with Type 2 diabetes
Type 2 diabetes is at least 4 times more common among British South Asians than in the general population. South Asians also have a higher risk of diabetic complications, a situation which has been linked to low levels of physical activity observed amongst this group. Little is known about the factors and considerations which prohibit and/or facilitate physical activity amongst South Asians. This qualitative study explored Pakistani (n = 23) and …
Risky Relations. Family, Kinship and the New Genetics by Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A.
Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A. Risky Relations. Family, Kinship and the New Genetics . Oxford : Berg , 2006 £16.50 (pbk) 176pp . ISBN 1-84520-179-5 . Despite a large number of projects which have looked at lay experiences of genetic medicine and countless published papers on individuals’ experiences of predictive and prenatal testing and the publics’ understanding of genetics, little has been written about individual…
Varieties of suffering: Living with the risk of ovarian cancer
Risk is a defining feature of late modernity. While it is acknowledged that risk has come to mean danger, the sociological literature suggests that risk is becoming abstracted from reality and presents it as lacking emotional content. This paper argues that the lived experiences of risk should no longer be overlooked. Using data collected in a qualitative interview study of women who have a family history of ovarian cancer, it demonstrates that w…
Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family
Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations …
Contextualising accounts of illness: Notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation
We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsib…
We should change ourselves, but we can't’: Accounts of food and eating practices amongst British Pakistanis and Indians with type 2 diabetes
Perceptions that South Asian foodstuffs necessarily comprise 'risky' options need to be tackled amongst patients and possibly their healthcare providers. To enable Indians and Pakistanis to manage their diabetes and identity simultaneously, guidelines should promote changes which work with their current food practices and preferences; specifically through lower fat recipes for commonly consumed dishes. Information and advice should be targeted at…
Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies
Patients' experiences and views of cascade screening for familial hypercholesterolemia (FH): A qualitative study
Understanding the outcomes of multi-centre clinical trials: A qualitative study of health professional experiences and views
Inter-embodiment and the experience of genetic testing for familial hypercholesterolaemia
In this article we explore the concept of inter-embodiment and its potential for advancing sociological research into illness biography and genetic identity. Inter-embodiment theory views embodied knowledge as produced through relations between bodies, as opposed to originating from within the body or as the product of relations between disembodied selves. Drawing on a qualitative study in which we interviewed 38 individuals about their experienc…
Timing and context: Important considerations in the return of genetic results to research participants
Rehabilitating the sick role: The Experiences of High-Risk Women Who Undergo Risk Reducing Breast Surgery
In recent years, Talcott Parsons’ work has come under renewed scrutiny by sociologists who argue that his concept of the sick role has a role to play in current accounts of health and illness. In this paper we describe the ways in which Australian women who had undergone elective risk-reducing breast surgery (with or without ovarian surgery) spoke about their convalescence. Women presented two contrasting recovery narratives in describing their e…
A qualitative study of patients’ perceptions of the value of molecular diagnosis for familial hypercholesterolemia (FH)
I would like to discuss it further with an expert”: A focus group study of Finnish adults’ perspectives on genetic secondary findings
How Should Decision Aids Be Used During Counseling to Help Patients Who Are “Genetically at Risk”
People with genetic predispositions to disease are faced with uncertainty about whether, when, and to what extent an illness will actually develop. This prognostic uncertainty, combined with knowledge that preventative interventions (eg, risk-reducing surgeries for familial cancer syndromes) could significantly affect people's lives, renders prevention decisions especially challenging. This article illuminates ethical questions about the use of d…
Negotiating jurisdictional boundaries in response to new genetic possibilities in breast cancer care: The creation of an ‘oncogenetic taskscape
Taking it to the bank: The ethical management of individual findings arising in secondary research
A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined …
Eating to live or living to eat: The meaning of hunger following gastric surgery
This paper is based upon interviews with twenty-seven women and men who have an inherited risk of developing gastric cancer and have had their stomach removed as a preventative measure. We describe what happens when bodily processes – digestion - are disrupted by the removal of the stomach. Interviewees' who had undergone prophylactic total gastrectomy experienced changes to the lived experience of hunger and appetite. The interviewees' accounts …
Digital/computational phenotyping: What are the differences in the science and the ethics
The concept of 'digital phenotyping' was originally developed by researchers in the mental health field, but it has travelled to other disciplines and areas. This commentary draws upon our experiences of working in two scientific projects that are based at the University of Oxford's Big Data Institute - The RADAR-AD project and The Minerva Initiative - which are developing algorithmic phenotyping technologies. We describe and analyse the concepts…
Inalienable data: Ethical imaginaries of de-identified health data ownership
Many legal, ethical, and regulatory frameworks allow de-identified health data to be shared for research without patients’ opt-in consent. However, there may be public concerns about this practice, as people may feel they should have some say in how such data is used. This paper introduces the concept of the “inalienability of de-identified data,” to describe a key assumption underlying that public concern and preference. The assumption, derived …
Medicine (22 works) · Psychology (20 works) · BRCA gene mutations in cancer (14 works) · Political science (11 works) · Sociology (10 works) · Ethics in Clinical Research (9 works) · Computer Science (7 works) · Genetic counseling (7 works) · Genetics (7 works) · Nursing (7 works)