Preimplantation genetic diagnosis (PGD) providers and patients have a vested interest in policy related to the use and regulation of PGD. To understand their experiences and attitudes, 32 in-depth interviews were conducted. Participants included 13 people at risk of transmitting a single-gene alteration to their children (10/13 had actually used PGD to try to have an unaffected child) and 19 PGD service providers (four nurses, five genetic counsellors, two reproductive endocrinologists, two geneticists, two physician-geneticists, two embryologists, and two laboratory directors). Virtually all participants supported the use of PGD to avoid severe, life-threatening genetic illness or to select embryos that are a tissue match for a sick sibling, but their attitudes varied significantly over the appropriateness of using PGD to avoid adult-onset genetic disease, to select for sex, or to select for other non-medical characteristics. There was disagreement within the PGD provider community about whether or not PGD is experimental. Participants were more concerned about overzealous government regulation of PGD creating barriers to access than potential abuses of the technology, and expected the PGD provider community to take the lead in ensuring that PGD is used for ethically appropriate purposes.
Oocyte donation is growing at an exponential rate. Currently, thousands of women donate each year. The health services that donors receive deserve evaluation. Thirty-three former donors were recruited from IVF clinics, a matching agency, the Internet, advertisements, and word of mouth. In-depth interviews were conducted to learn what motivated the donation, to determine how satisfied donors were with the experience and what issues played a role in donor satisfaction, and to identify recommendations to improve the process. None of the participants regretted their decision to donate, but they were not always completely satisfied with the donation experience. The physical process, compensation, quality of medical care, and level of involvement in the process were the primary factors that affected satisfaction. Matching agencies and IVF clinics may improve donor satisfaction by: minimizing trips to the clinic; using protocols that limit the number of intramuscular injections; reducing the risk of hyperstimulation syndrome; providing follow-up care; reimbursing for expenses such as lost work, travel, and child care; separating direct reimbursements from 'income' to decrease the amount of taxes donors must pay on compensation; treating donors with respect and appreciation; and informing them about the outcome. Improved donor satisfaction is likely to improve donor recruitment and retention.
Purpose: Progress in identifying genes for deafness together with implementation of universal audiologic screening of newborns has provided the opportunity for more widespread use of molecular tests to detect genetic forms of hearing loss. Efforts to assess consumer attitudes toward these advances have lagged behind. Methods:Consumer focus groups were held to explore attitudes toward genetic advances and technologies for hearing loss, views about newborn hearing screening, and reactions to the idea of adding molecular screening for hearing loss at birth. Focus group discussions were recorded, transcribed and analyzed. Results: Five focus groups with 44 participants including hearing parents of deaf children, deaf parents and young deaf adults were held. Focus group participants supported the use of genetic tests to identify the etiology of hearing loss but were concerned that genetic information might influence reproductive decisions. Molecular newborn screening was advocated by some; however, others expressed concern about its effectiveness. Conclusion: Documenting the attitudes of parents and other consumers toward genetic technologies establishes the framework for discussions on the appropriateness of molecular newborn screening for hearing loss and informs specialists about potential areas of public education necessary prior to the implementation of such screening. Genet Med 2006:8(12):779-783. Key Words: hearing loss, deafness, molecular testing, genetic testing, focus groups, consumer attitudes, newborn screeningHearing loss affects approximately 3-4:1,000 newborns and by the end of the first decade of life, an additional 5-9 cases of permanent childhood hearing loss are identified for every 10 cases present at birth, making it one of the most common birth defects in the United States. 1 Genetic factors account for an estimated 60% of profound hearing loss present at birth or in early childhood. 2,3 To date, more than 100 genes involved in nonsyndromic and syndromic deafness have been mapped and over 40 genes have been cloned. 4 More than half of nonsyndromic hearing loss in children can be attributed to mutations in a single gene, GJB2 (Gap Junction Beta 2), which codes for the connexin 26 protein. 5 In 1999, U.S. federal legislation mandated the establishment of early hearing detection and intervention (EHDI) programs in every state. The goals of the state-based EHDI programs are to screen all newborns for hearing before one month of age using audiologic techniques, diagnose the hearing loss no later than three months of age and coordinate appropriate intervention services no later than six months of age. 6,7 Discussions about how to best incorporate genetic services into the current EHDI program framework have been initiated. 8 -11 While auditory hearing screening is an effective and relatively inexpensive way to detect hearing loss in the newborn period, a major limitation is that all forms of prelingual hearing loss are not expressed at birth and could be missed by EHDI programs based solely on audio...
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