The role of experiential knowledge within attitudes towards genetic carrier screening: A comparison of people with and without experience of spinal muscular atrophy
| Autor: | Philip J. Young, Oliver Warren, Felicity K. Boardman, Frances Griffiths |
|---|---|
| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
0301 basic medicine
Adult Male medicine.medical_specialty Health Knowledge Attitudes Practice media_common.quotation_subject Population Genetic Carrier Screening 030105 genetics & heredity Muscular Atrophy Spinal 03 medical and health sciences 0302 clinical medicine RA0421 Perception Surveys and Questionnaires medicine Experiential knowledge Humans Family 030212 general & internal medicine education Psychiatry media_common spinal muscular atrophy education.field_of_study business.industry Qualitative interviews Public Health Environmental and Occupational Health Spinal muscular atrophy genetic screening Middle Aged medicine.disease SMA ethics 3. Good health experiential knowledge Original Research Paper Female Carrier screening business Original Research Papers Clinical psychology |
| Zdroj: | Health Expectations : An International Journal of Public Participation in Health Care and Health Policy |
| ISSN: | 1369-7625 1369-6513 |
| Popis: | Purpose Autosomal recessive conditions, while individually rare, are a significant health burden with limited treatment options. Population carrier screening has been suggested as a means of tackling them. Little is known, however, about the attitudes of the general public towards such carrier screening and still less about the views of people living with candidate genetic diseases. Here, we focus on the role that such experience has on screening attitudes by comparing views towards screening of people with and without prior experience of the monogenetic disorder, Spinal Muscular Atrophy. Methods An exploratory sequential mixed methods design was adopted. In-depth qualitative interviews were used to develop two surveys. The surveys addressed attitudes towards carrier screening (pre-conceptual and prenatal) for SMA. Participants 337 participants with SMA experience completed the SMA Screening Survey (UK) and 336 participants with no prior experience of SMA completed the UK GenPop Survey, an amended version of the SMA Screening Survey (UK). Results The majority of both cohorts were in favour of pre-conception and prenatal carrier screening, however people with experience of type II SMA were least likely to support either. Key differences emerged around perceptions of SMA, with those without SMA experience taking a dimmer view of the condition than those with. Conclusion This study underscores the significance of prior experience with the condition to screening attitudes. It highlights the need for accurate and high-quality educational resources to support any future carrier screening programmes, that particularly in relation to rare genetic disorders like SMA that will fall outside the remit of everyday experience for the majority of the population. |
| Databáze: | OpenAIRE |
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