Reproductive planning after genetic counselling: a perspective from the last decade

Frets, Petra G.; Niermeijer, Martinus F.

doi:10.1111/j.1399-0004.1990.tb03584.x

Cited by 21 publications

(4 citation statements)

References 55 publications

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“…The availability of prenatal diagnosis induced a change in reproductive planning in a majority of parents with one or more children affected by such diseases. 30 Our experiences confirm that the availability and reliability of prenatal diagnosis are the most decisive factors in the reproductive planning of couples at high risk for such diseases. 28 The strength of desire to have children can be inferred from the number of affected and healthy children the couples had during the decision-making period.…”

Section: Counseling Topicssupporting

confidence: 64%

“…28 The strength of desire to have children can be inferred from the number of affected and healthy children the couples had during the decision-making period. 30 The desire to have children is also reflected by the position of the affected child holds in the birth order. Our experience DSJUOG 1976-1980 1981-1985 1986-1990 1991-1995* 1996-2000…”

Section: Counseling Topicsmentioning

confidence: 99%

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Changing Public Demand in the Genetic Counseling during the Past Decades

Papp

2011

Donald School Journal of Ultrasound in Obstetrics and Gynecology

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Before discovering genetic rules, genetic counseling was based on empirical observations. In this process, it was important to recognize that certain diagnoses were more frequent in certain couples’ descendants. The 20th century witnessed revolutionary progress in the science of genetics that coincided with increasing societal demands and therefore became an integral part of modern genetic counseling. Genetic screening is changing from Mendelian disease ascertainment to predictive testing. We are also learning that the phenotypes of even simple Mendelian disorders are influenced by complex genetic and environmental factors. Moreover, developing knowledge about genotype/phenotype associations and many other aspects of genetic epidemiology will increasingly require referral to clinical geneticists.

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Section: Counseling Topicssupporting

confidence: 64%

Section: Counseling Topicsmentioning

confidence: 99%

Changing Public Demand in the Genetic Counseling during the Past Decades

Papp

2011

Donald School Journal of Ultrasound in Obstetrics and Gynecology

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“…The expectations arising from genetic counseling have changed over the years. Frets and Niermeijer (1990) noted that since the introduction of DNA analysis and prenatal diagnosis, there has been a shift in the dominance of factors influencing reproductive planning after genetic counseling. In contrast to the literature in the 1970s, magnitude of the genetic risk is no longer one of the decisive factors, whereas the controlling actions gradually override other factors.…”

Section: Discussionmentioning

confidence: 99%

Patients' information needs and decision-making processes: What can be learned from genetic counselees?

Shiloh¹,

Gerad²,

Goldman³

2006

Health Psychology

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This field study investigated the information needs and decision-making strategies of 161 genetic counselees interviewed just prior to counseling. Patients were interested mostly in information about the outcomes and consequences of the alternative options at their disposal and about measures to defuse the risks. They wanted mainly information stated with certainty and were less interested in probability information. There was no difference in the search for information between the alternative eventually chosen and the one not chosen. There was a difference, however, among types of decisions and the interest in the various categories of information. These findings were interpreted within the theoretical model of decision making in natural risky situations (O. Huber, 1997). Practical implications for shared medical decision making are presented.

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“…Especially as Borry et al 50 have shown that clinicians have concerns about judging whether people of particular ages are mature enough to make autonomous decisions about predictive or presymptomatic tests. Previous research also shows that illness experiences affect whether individuals wish to have genetic tests, 51 how they understand test results 52 and make reproductive decisions. 53 Previous experience with an illness may function as a barrier for adults, whereby memories of a person affected by illness become more influential than medical facts given by health professionals.…”

Section: Discussionmentioning

confidence: 99%

A qualitative study exploring genetic counsellors’ experiences of counselling children

et al. 2010

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The identification of healthy carriers by newborn screening programmes raises questions about how and when the carrier results will be conveyed to child. There is currently a lack of information concerning how best to convey carrier information to children. This is a serious gap in the literature and practice. This study examined genetic counsellors' experiences of counselling children to explore how to support and inform children about their carrier result. Practising members of the United Kingdom (UK) Association of Genetic Nurses and Counsellors took part in semi-structured telephone interviews. Respondents described the communication process and identified barriers and facilitators of communication. Age, illness experience and maturity were variously discussed as facilitators; all of which are integral to psychological theories of children's understanding of illness. Adaptive family communication, school tuition and educational materials were also seen as influencing counselling efficacy. Relevant materials that children could keep were also seen as important to enhance children's autonomy. Yet, such resources were rare, constituting a barrier to communication. Counsellors reported communication was further impeded by maladaptive family communication and resistance from children to engaging in counselling. By exploring the facilitators and barriers inherent in communicating genetic information to children, guidance can be offered to counsellors, researchers and parents. This study indicates that some factors (eg illness experiences) previously identified by psychological theories may act in complex ways within this setting. Importantly, the factors identified as being most influential when communicating with children about genetics are amenable to change through interventions, support and training.

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Reproductive planning after genetic counselling: a perspective from the last decade

Cited by 21 publications

References 55 publications

Changing Public Demand in the Genetic Counseling during the Past Decades

Changing Public Demand in the Genetic Counseling during the Past Decades

Patients' information needs and decision-making processes: What can be learned from genetic counselees?

A qualitative study exploring genetic counsellors’ experiences of counselling children

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