Testing the limits of the ‘joint account’ model of genetic information: a legal thought experiment

Foster, Charles; Herring, Jonathan; Boyd, Magnus

doi:10.1136/medethics-2014-102142

Cited by 11 publications

(7 citation statements)

References 9 publications

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“…Foster et al 12 have recently suggested that a relational approach together with the joint account model (relational joint account herein) would be a workable model in the courts. Notwithstanding, some have pointed out unresolved issues, including the fuzzy boundaries of the ‘genetic family,’ and their competing rights to know and not know 13 14 It is unclear what patients think, because existing empirical studies about consent and confidentiality are few and limited: they have explored the issues only briefly; used surveys that lack the nuances of qualitative research; focused narrowly on situations where patients explicitly refuse to share; and have questionable transferability to the UK and National Health Service (NHS).…”

Section: Introductionmentioning

confidence: 99%

‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine: Table 1

2016

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In genetic medicine, a patient's diagnosis can mean their family members are also at risk, raising a question about how consent and confidentiality should function in clinical genetics. This question is particularly pressing when it is unclear whether a patient has shared information. Conventionally, healthcare professionals view confidentiality at an individual level and ‘disclosure without consent’ as the exception, not the rule. The relational joint account model, by contrast, conceptualises genetic information as confidential at the familial level and encourages professionals to take disclosure as the default position. In this study, we interviewed 33 patients about consent and confidentiality and analysed data thematically. Our first theme showed that although participants thought of certain aspects of genetic conditions—for example, the way they affect day-to-day health—as somewhat personal, they perceived genetic information—for example, the mutation in isolation—as familial. Most thought these elements were separable and thought family members had a right to know the latter, identifying a broad range of harms that would justify disclosure. Our second theme illustrated that participants nonetheless had some concerns about what, if any, implications there would be of professionals treating such information as familial and they emphasised the importance of being informed about the way their information would be shared. Based on these results, we recommend that professionals take disclosure as the default position, but make clear that they will treat genetic information as familial during initial consultations and address any concerns therein.

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Section: Introductionmentioning

confidence: 99%

‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine: Table 1

2016

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“…Researchers, policy-makers, and HCPs do not rely solely on published guidelines to help resolve disclosure dilemmas 5. Further research be conducted regarding practical ways for HCPs to share information, how HCPs can resolve competing interests within potentially dysfunctional families, 52 , 53 and attitudes toward sharing information with family members in the context of genomic medicine …”

Section: Discussionmentioning

confidence: 99%

Health-care professionals’ responsibility to patients’ relatives in genetic medicine: a systematic review and synthesis of empirical research

Dheensa

Fenwick

Shkedi‐Rafid

et al. 2016

Genetics in Medicine

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Purpose:The extent of the responsibility of health-care professionals (HCPs) to ensure that patients' relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.Genet Med 18 4, 290–301.Methods:Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs' responsibility to relatives with respect to disclosure.Genet Med 18 4, 290–301.Results:Health-care professionals generally felt a responsibility to patients' relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.Genet Med 18 4, 290–301.Conclusion:We argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice.Genet Med 18 4, 290–301.

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“…There has been a move by genetic counsellors to consider viewing genomic information as a joint account when it comes to disclosing to other family members, which is necessary in certain cases. 25 ES has the potential to unveil non-paternity and consanguinity, which may introduce further challenging conversations for clinicians and parents.…”

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confidence: 99%

Evidence to Support the Clinical Utility of Prenatal Exome Sequencing in Evaluation of the Fetus with Congenital Anomalies

Mone¹,

McMullan²,

Williams³

et al. 2021

BJOG

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Structural differences (congenital anomalies) in the makeup of the baby's heart, brain and other organs are found on antenatal ultrasound scans in up to 3% of pregnancies. These often have a genetic cause, arising because of changes in the chromosomes (which store our genetic material) or the DNA code that make up the genes. The more differences a baby has the more likely the risk of underlying genetic disease. If a structural difference is found, parents are usually offered a genetic test, which may be carried out on cells taken either from the placenta (chorionic villous sampling) or the fluid surrounding the baby (amniocentesis). At the moment, these cells are only tested for changes in the chromosomes and are only able to reveal the underlying cause in about 40% of unborn babies.Prenatal exome sequencing (ES) is a new genetic test, which, when combined with testing the DNA of both parents can find changes in the baby's genetic code. If a DNA change is found that can explain the structural changes seen on ultrasound, specific information about the underlying diagnosis can be given to the parents. Having this information can help parents make important decisions about their ongoing pregnancy, as well as help doctors to care for the mother and baby. Finding a genetic change can also help to understand how the condition has arisen and whether it might happen again in another pregnancy. It may also be possible to test for the genetic condition in future pregnancies.Although prenatal ES is an exciting new way to improve diagnosis rates for structural differences, it has some challenges. While the test is very detailed, it may not always find a genetic explanation and sometimes the results are difficult to interpret. For example, genetic changes can be found where their significance for the pregnancy is unclear.More recently, two studies have now shown that prenatal ES can find a genetic diagnosis in at least 10% of pregnancies with structural differences where standard chromosome testing has been negative. This paper reviews these studies, along with earlier evidence on ES and provides clinicians with guidance for future practice.

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Testing the limits of the ‘joint account’ model of genetic information: a legal thought experiment

Cited by 11 publications

References 9 publications

‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine: Table 1

‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine: Table 1

Health-care professionals’ responsibility to patients’ relatives in genetic medicine: a systematic review and synthesis of empirical research

Evidence to Support the Clinical Utility of Prenatal Exome Sequencing in Evaluation of the Fetus with Congenital Anomalies

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