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Genetic risk information has relevance for patients’ blood relatives. However, cascade testing uptake in at-risk families is <50%. International research supports direct notification of at-risk relatives by health professionals (HPs), with patient consent. However, HPs express concerns about the privacy implications of this practice. Our privacy an...
Contexts in source publication
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... following hypothetical case study (Figure 1) is used as the basis for this privacy analysis. ...
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... following hypothetical case study (Figure 1) is used as the basis for this privacy analysis. ...
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... the genetics service breached its privacy obligations by notifying Darcy directly in the hypothetical case study provided (Figure 1)? ...
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... the genetics service breached its statutory privacy obligations by notifying Darcy directly in the hypothetical case study provided (Figure 1) Individuals' contact details, such as addresses and telephone numbers, are generally accepted to be personal information [17] (but not sensitive information), so their collection and/or use must comply with the requirements applicable to personal information. ...
Citations
... Privacy/confidentiality concern 8 (9. concludes that direct notification of relatives, with patient consent, can be undertaken in accordance with Australian privacy laws [43]. However, there is clearly a distinction between whether local privacy regulations permit a practice, and the public's support of that practice. ...
Genetic risk information for medically actionable conditions has relevance for patients’ blood relatives. However, cascade testing uptake in at-risk families is <50%, and the burden of contacting relatives is a significant barrier to dissemination of risk information. Health professionals (HPs) could notify at-risk relatives directly, with patients’ consent. This practice is supported by international literature, including strong public support. However, there is little exploration of the Australian public’s views about this issue. We surveyed Australian adults using a consumer research company. Respondents were provided a hypothetical scenario and asked about views and preferences regarding direct contact by HPs. 1030 members of the public responded, with median age 45 y and 51% female. The majority would want to be told about genetic risk for conditions that can be prevented/treated early (85%) and contacted directly by a HP (68%). Most preferred a letter that included specific information about the genetic condition in the family (67%) and had no privacy concerns about HPs sending a letter using contact details provided by a relative (85%). A minority (< 5%) had significant privacy concerns, mostly about use of personal contact information. Concerns included ensuring information was not shared with third parties. Almost 50% would prefer that a family member contacted them before the letter was sent, while about half did not prefer this or were unsure. The Australian public supports (and prefers) direct notification of relatives at risk of medically actionable genetic conditions. Guidelines would assist with clarifying clinicians’ discretion in this area.
