Scientific and ethical consequences of disease prediction

Siegler, Mark; Amiel, Stephanie A.; Lantos, John D.

doi:10.1007/bf00586280

Cited by 19 publications

(8 citation statements)

References 23 publications

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“…The impact of the knowledge of being at high risk could be prolonged anxiety, stress and depression, changes in school attendance and education level, changes in lifestyle and educational style of the family, and changes in relationships to siblings or partners, employment, marriage or financial prospects 3 . the perceived susceptibility to and severity of the condition (e.g.…”

Section: Journal Of Pediatric Endocrinology and Metabolismmentioning

confidence: 99%

Psychological and Ethical Aspects of Prevention Trials

Roth

2001

Journal of Pediatric Endocrinology and Metabolism

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Advances in immunological and genetic tests and in therapeutics may soon make it possible to predict, prevent or delay the development of type 1 diabetes mellitus (DM). Psychological support should be available at every stage of the screening and prevention process for high-risk individuals. Each step in this process results in a threat to the affected individual and his/her family, followed by anxiety, decision processes, uncertainty, conflicts and depression, and also attempts to cope with these. At the first step, information about the screening procedure is provided, and an attempt is made to motivate individuals and families to take part. At the second step, there is notification of risk and, for the small group of marker-positive individuals, an invitation to participate in a prevention trial. At the third step, the individuals included in a prevention protocol have to deal with anxiety over receiving placebo, maintain cooperation with therapy, and cope with potential failures of the prevention. There are only a few psychological data gained in DM screening or intervention studies, showing high clinical anxiety while screening, both before and after notification of risk. After a few months of anxiety, it usually drops to normal levels, but family functioning seems to be changed. Data are explained within the framework of an extended Health Belief Model. Data regarding the psychological impact on family members and identification of variables related to continued study participation are needed for studies seeking to recruit and retain subjects in longitudinal protocols for prediction and prevention of type 1 DM.

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Section: Journal Of Pediatric Endocrinology and Metabolismmentioning

confidence: 99%

Psychological and Ethical Aspects of Prevention Trials

Roth

2001

Journal of Pediatric Endocrinology and Metabolism

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“…Screening of the general population raises both psychosocial and ethical questions (14–16) and has been regarded by some as unethical (15), as it is thought to cause a great deal of anxiety in people who are unaware of diabetes as a possible risk for their children. However, as the empiric basis is weak, we have studied if, and by how much, mothers in the general population become worried when their babies participate in a screening program.…”

mentioning

confidence: 99%

Screening for prediabetes in the general child population: maternal attitude to participation

Ludvigsson

Sepa

2001

Pediatric Diabetes

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Screening to predict serious diseases in the general population has been regarded as unethical as it is supposed to make people anxious. Therefore we have evaluated whether mothers become anxious when their babies participate in a project to predict diabetes in the general child population. Out of 21 700 newborn children, 16 300 (75%) entered the ABIS project (All Babies in South-east Sweden). The parents (usually the mothers) answered a questionnaire at the child's birth and then again after 1 yr. A total of 10 868 representative birth questionnaires had been analyzed. To the question, 'How do you feel when you know that your child is participating in this study?', only 2.5% of mothers of children with type 1 diabetes in the family answered 'more anxious/much more anxious', and even fewer (1.5%) of the mothers in the general population (p < 0.01). A total of 52.5% of the general population answered 'calmer/more reassured' (29.3% 'calmer' and 23.2% 'much calmer'), while 43.3% felt unaffected. Those 1.5% of mothers who reported becoming more anxious were more likely to be in an unstable social situation (unemployed, p < 0.001; born abroad, p < 0.001; low education, p < 0.001). At the 1-yr follow-up, 4948 unselected questionnaires had been analyzed. Only 1.2% of the mothers felt 'more anxious', while the overwhelming majority felt either unaffected (58.7%) or calmer (38.6%). At this follow-up, most of those who had felt 'more anxious' at birth did not feel that way any longer, and none of those with diabetes in the family. We conclude that large-scale screening studies for the prediction of diabetes in the general population can be performed without causing increased anxiety. A few parents, most often found in the group with known social problems, might need extra information and support.

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“…This requires performing geographically representative schoolbased screenings throughout the state. If conducted using ethical recommendations from Siegler et al (1992), AN screening is noninvasive, easy to perform, and potentially beneficial. When conducted in conjunction with other routine screenings or health exams, it is inexpensive.…”

Section: Discussionmentioning

confidence: 99%

“…Any future, broad-based screening program must be coupled with an efficacious prevention strategy or early treatment program (Siegler et al, 1992). It is necessary therefore to incorporate community-based, school-based, and/or family based intervention programs, including education and training of primary care providers, prior to recommending broad-based screening activities.…”

Section: Discussionmentioning

confidence: 99%

Acanthosis Nigricans as an Early Clinical Proxy Marker of Increased Risk of Type II Diabetes

Bent

Shuster

Hurley³

et al. 1998

Public Health Nursing

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Diabetes affects 6% of the national population, yet approximately 50% of persons with diabetes remain undiagnosed and receive no treatment. In specific populations, Acanthosis Nigricans (AN) may serve as an early clinical proxy marker of increased risk of type II diabetes. The results of this pilot project to screen selected school age students in New Mexico for AN indicate that a large number of these students may be at increased risk for developing type II diabetes as young adults. The future burden of diabetes on individuals, families, communities, and health care systems may be greater than previously recognized.

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Scientific and ethical consequences of disease prediction

Cited by 19 publications

References 23 publications

Psychological and Ethical Aspects of Prevention Trials

Psychological and Ethical Aspects of Prevention Trials

Screening for prediabetes in the general child population: maternal attitude to participation

Acanthosis Nigricans as an Early Clinical Proxy Marker of Increased Risk of Type II Diabetes

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