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1.
AMA J Ethics ; 18(6): 614-23, 2016 Jun 01.
Article in English | MEDLINE | ID: mdl-27322995

ABSTRACT

Approximately 15 percent of women experience depression while pregnant or in the year following pregnancy. While antidepressants are usually effective and considered standard treatment for depression, concerns arise that what might be good for mom could be harmful for the baby. Medical evidence demonstrates that, on balance, treating mental illness with psychotropic medication along with talk therapy is in the best interest of both mother and baby; however, women may resist treatment because they overestimate the risks of medication and underestimate the risks of untreated mental illness. Clinicians can help address this perceived ethical dilemma and provide optimum care to their pregnant patients by collaborating with their patients on a treatment plan, informing them about the risks of untreated mental illness, and providing reassurance that selective serotonin reuptake inhibitors (SSRIs) and many other psychotropic medications are appropriate care even if a woman is pregnant or breastfeeding.


Subject(s)
Decision Making/ethics , Depression/drug therapy , Ethics, Medical , Physician-Patient Relations , Pregnancy Complications/drug therapy , Psychotropic Drugs/therapeutic use , Selective Serotonin Reuptake Inhibitors/therapeutic use , Antidepressive Agents/therapeutic use , Attitude of Health Personnel , Breast Feeding , Communication , Depression/complications , Depression, Postpartum/drug therapy , Female , Humans , Infant , Patient Participation , Pregnancy , Risk
3.
J Genet Couns ; 17(3): 252-60, 2008 Jun.
Article in English | MEDLINE | ID: mdl-18247107

ABSTRACT

Genetic services for deafness are being increasingly sought due to the introduction of early hearing detection and intervention programs, as well as the rapid progress in the identification of deafness genes. This study aimed to assess the motivations of consumers for pursuing genetic testing as well as their preferences for provision of these services. We conducted 5 focus groups consisting of hearing parents of deaf children, deaf parents, and unmarried deaf adults. Motivations for pursuing genetic testing included determining the etiology, helping to alleviate the guilt associated with the diagnosis of hearing loss in a child, and acquiring information to help them and other family members prepare for the future. Most participants thought that a genetic counselor/geneticist would be the most appropriate professional to provide genetics services. For culturally Deaf individuals, the communication method was seen as more important than the type of professional. Parents preferred that genetic evaluation, including testing, occur either immediately at or a few months after the audiologic diagnosis of hearing loss.


Subject(s)
Genetic Testing/psychology , Hearing Loss/therapy , Motivation , Adolescent , Adult , Female , Hearing Loss/diagnosis , Hearing Loss/genetics , Humans , Male , Middle Aged
4.
Genet Med ; 8(12): 779-83, 2006 Dec.
Article in English | MEDLINE | ID: mdl-17172941

ABSTRACT

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.


Subject(s)
Attitude , Deafness/diagnosis , Deafness/genetics , Focus Groups , Genetic Testing/psychology , Neonatal Screening/psychology , Adolescent , Adult , Female , Hearing Tests/psychology , Humans , Infant, Newborn , Male , Perception
6.
Reprod Biomed Online ; 11(4): 486-96, 2005 Oct.
Article in English | MEDLINE | ID: mdl-16274615

ABSTRACT

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.


Subject(s)
Preimplantation Diagnosis/methods , Preimplantation Diagnosis/psychology , Adult , Attitude , Attitude to Health , Bioethics , Embryology , Endocrinology , Female , Genetic Counseling , Genetic Diseases, Inborn/diagnosis , Genetic Testing , Genetics , Heterozygote , Humans , Interviews as Topic , Male , Middle Aged , Nurses , Parents , Pregnancy , Pregnancy Outcome , Public Policy , Risk
7.
Am J Med Genet A ; 137(2): 161-9, 2005 Aug 30.
Article in English | MEDLINE | ID: mdl-16082707

ABSTRACT

Though much research about the public's views of scientists, genetic research and its moral, ethical, and social implications exists, little has been done to investigate how scientists view their own role(s) in public discussions and policy formation related to genetic research and technologies. We interviewed 20 academic geneticists in the United States about their perceptions of the roles they and others (e.g., professional societies, the public, ethicists, and elected officials) do and should play in the formation of science policy, the communication of science to the public, and the public discussions of moral and ethical issues raised by scientific advances. The participants in our study thought that scientists should be more actively involved in public outreach and science policy formation, but frequently they felt ill-equipped and unsupported by their peers and institutions to pursue these activities. Furthermore, many were skeptical of or did not trust elected officials--who they consider uninformed about the issues and too driven by political agendas--to formulate sound science policy. They do, however, have faith in the ability of scientific societies to influence policy effectively, and some thought that societies should play a larger role, both in science policy and as a liaison between scientists and the public. Finally, participants offered suggestions for increasing the involvement and influence of scientists in science-policy formation and public discourse.


Subject(s)
Genetics , Policy Making , Public Policy , Research Personnel , Adult , Attitude , Bioethical Issues/standards , Biomedical Research/methods , Female , Humans , Male , Middle Aged , Science/methods , Science/standards , United States
8.
Fertil Steril ; 83(6): 1612-21, 2005 Jun.
Article in English | MEDLINE | ID: mdl-15950627

ABSTRACT

OBJECTIVE: To identify underlying beliefs and values shaping Americans' opinions about the appropriate use of new reproductive genetic technologies (RGTs), including preimplantation genetic diagnosis, hypothetical genetic modification, and sperm sorting for sex selection. DESIGN: Scenarios with ethical dilemmas presented to 21 focus groups organized by sex, race/ethnicity, religion, age, education, and parental status. SETTING: A city in each state: California, Colorado, Massachusetts, Michigan, and Tennessee. PARTICIPANT(S): One hundred and eighty-one paid volunteers, ages 18 to 68. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Beliefs and values that shape participants' opinions about the appropriate use of new RGTs. RESULT(S): Regardless of demographic characteristics, focus group participants considered six key factors when determining the appropriateness of using RGTs: [1] whether embryos would be destroyed; [2] the nature of the disease or trait being avoided or sought; [3] technological control over "natural" reproduction; [4] the value of suffering, disability, and difference; [5] the importance of having genetically related children; and [6] the kind of future people desire or fear. CONCLUSION(S): Public opinions about the appropriate use of RGTs are shaped by numerous complementary and conflicting values beyond classic abortion arguments. Clinicians and policy-makers have the opportunity to consider these opinions when creating messages and crafting policy.


Subject(s)
Attitude to Health , Genetic Techniques/trends , Public Opinion , Reproductive Techniques, Assisted/trends , Adolescent , Adult , Aged , Female , Genetic Techniques/ethics , Humans , Male , Middle Aged , Preimplantation Diagnosis/ethics , Preimplantation Diagnosis/methods , Preimplantation Diagnosis/trends , Prenatal Diagnosis/ethics , Prenatal Diagnosis/methods , Prenatal Diagnosis/trends , Reproductive Techniques, Assisted/ethics
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