Exact(1)
Architectural design of health-care institutions has potential to positively influence perceived patient privacy in areas in where multiple patient-staff communications routinely occur and where patient privacy is an important issue, but enclosed counters with a queue at distance do not prevent incidental disclosure of individually identifiable health information.
Similar(59)
Given some of the federal HIPAA guidelines on incidental disclosures, it appears that OHSU tends to go above and beyond what is currently considered good practice in keeping patients' medical information confidential.
Under the rules, the "incidental use or disclosure" of personal information is allowed.
Therefore 8.8% of families enrolled for exome sequencing under the NIH UDP protocol had incidental findings requiring disclosure if the sequencing had been performed by a CLIA-certified laboratory.
As one respondent astutely observed, '—The disclosure of incidental findings is not an incidental activity.' The first step toward drafting collaborative policies is to dispel the notion that a one-size-fits-all standard will best address the ethical tensions inherent to IF disclosure.
However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing.
When the patient/parent refuses to be informed about incidental findings, even if disclosure leads to beneficial interventions, the physician must ensure that adequate information has preceded this refusal.
Consequently, ethical issues that have traditionally been associated with clinical genetic testing, such as problems with the disclosure of incidental or future findings and concurrent psychological risks, may at first glance become more urgent for non-targeted personal genome testing.
However, whenever NGS is initiated, the treating physician has an obligation to discuss the full range of generated data and the possibility of incidental findings and its disclosure with the child/parents.
Disclosure of incidental findings can be resource intensive, and some argue that it would be unethical to use those resources for feedback when they could be used for research [ 35].
In a study looking at researcher perspectives on disclosure of incidental findings in genetic research, the surveyed investigators were concerned about the considerable time, energy and personnel necessary for re-contacting and re-consenting participants [ 34].
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