The family medical history as a tool in preconception consultation

Bennett, Robin L.

doi:10.1007/s12687-012-0107-z

Cited by 20 publications

(19 citation statements)

References 14 publications

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“…Recording the family health history to gain insight into possible inheritance patterns for a specific disorder has been a major tool in medical genetics for many decades (Bennett 2009). This process includes obtaining accurate information about family members, preferably for at least three generations (Eccles 2004).…”

Section: Introductionmentioning

confidence: 99%

“…The family history information includes number of individuals, current ages or ages of death of relatives, as well as relevant health information. The information gathering may be done face-to-face, by telephone or via a written questionnaire (Bennett 2012). In the course of taking a pedigree, medical information on relatives is often provided by a family member without the explicit consent of the person concerned.…”

Section: Introductionmentioning

confidence: 99%

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Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

et al. 2016

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While pedigree drawing software is often utilised in genetic services, the use of genealogical databases in genetic counselling is unusual. This is mainly because of the unavailability of such databases in most countries. Electronically generated pedigrees used for cancer genetic counselling in Iceland create pedigrees that automatically incorporate information from a large, comprehensive genealogy database and nationwide cancer registry. The aim of this descriptive qualitative study was to explore counsellees' experiences of genetic services, including family history taking, using these electronically generated pedigrees. Four online focus groups with 19 participants were formed, using an asynchronous posting method. Participants were encouraged to discuss their responses to questions posted on the website by the researcher. The main themes arising were motivation, information and trust, impact of testing and emotional responses. Most of the participants expressed trust in the method of using electronically generated pedigrees, although some voiced worries about information safety. Many experienced worry and anxiety while waiting for results of genetic testing, but limited survival guilt was noted. Family communication was either unchanged or improved following genetic counselling. The use of electronically generated pedigrees was well received by participants, and they trusted the information obtained via the databases. Age did not seem to influence responses. These results may be indicative of the particular culture in Iceland, where genealogical information is well known and freely shared. Further studies are needed to determine whether use of similar approaches to genealogical information gathering may be acceptable elsewhere.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

et al. 2016

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“…Currently, usual care in genetic counseling involves asking specific questions about a person’s family history over the phone or via written questionnaire prior to a session, or in person during a session. Ideally, information should be collected by the patient ahead of time and diagnoses should be confirmed by medical records if possible (Bennett 2012). This information is then mapped visually onto a hand-drawn pedigree (family tree) using standard nomenclature (Bennett 2012; Bennett et al 2008; Rich et al 2004).…”

Section: Introductionmentioning

confidence: 99%

“…Ideally, information should be collected by the patient ahead of time and diagnoses should be confirmed by medical records if possible (Bennett 2012). This information is then mapped visually onto a hand-drawn pedigree (family tree) using standard nomenclature (Bennett 2012; Bennett et al 2008; Rich et al 2004). This pedigree can be cumbersome to update, difficult to read and lacks portability.…”

Section: Introductionmentioning

confidence: 99%

Genetic Counselors’ Current Use of Personal Health Records‐Based Family Histories in Genetic Clinics and Considerations for Their Future Adoption

Widmer

DeShazo

Bodurtha

et al. 2012

Journal of Genetic Counseling

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Given the widespread adoption of electronic medical records and recent emergence of electronic family history tools, we examined genetic counselors’ perspectives on the emerging technology of the personal health record (PHR)-based family history tool that links to an electronic medical record (EMR). Two-hundred thirty-three genetic counselors responded to an on-line survey eliciting current use of electronic family history (EFH) tools and familiarity with PHR-based family history tools. Additionally, after being shown a series of screen shots of a newly developed PHR-based family history tool based on the U.S. Surgeon General’s My Family Health Portrait (United States Department of Health and Human Services 2009), participants were surveyed about the perceived usefulness, ease of use, and impact on current workflow that this kind of tool would have in their practices. Eighty-three percent reported that their institution has an EMR, yet only 35 % have a dedicated space for family history. Eighty-two percent reported that less than 5 % of their patients have a PHR, and only 16 % have worked with patients who have a PHR. Seventy-two percent or more agreed that a PHR-based family history tool would facilitate communication, increase accuracy of information, ensure consistency in recording information, increase focus on actual counseling, reduce repetitive questions, improve efficiency, and increase the legibility and clarity. Our findings suggest that participants were familiar with existing EFH tools, but that the majority did not use them in practice. Genetic counselors’ adoption of such tools is limited due to non-existence of this kind of technology or inability to integrate it into their clinics. They are also strongly in favor of adopting a PHR-based family history tool in genetics clinics, but have practical concerns that must be addressed before the tool can be implemented.

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“…In the context of identifying genetic risks, the family medical history continues to play a key role (Bennett 2012). Bennett provides an excellent overview of this, reminding us that the family medical history can also give insight into shared environmental exposures and offer important psychosocial clues as well.…”

mentioning

confidence: 99%