Ethical and moral perspectives of individuals who considered/used preimplantation (embryo) genetic testing.

This study examined perspectives on the ethical implications of preimplantation genetic testing (PGT) among individuals who actually (not hypothetically) used or considered using PGT. Most of the prior patient-centered research on PGT ethics used qualitative designs (9 out of the 11 articles) and focused only on single gene testing. This cross-sectional study used an anonymous online questionnaire; 15 items assessed potential ethical concerns involved in PGT decision-making, including clinical indications for PGT, the greater implications of PGT for society, and unused embryo disposition. N = 207 individuals (mean female/male age 35.7/38.9 years, 21% Hispanic or non-White) who had recently used or considered using PGT for single gene (60%) or for chromosomal testing (40%) completed the questionnaire. Most respondents supported PGT screening for disease conditions with childhood or adult onset that are untreatable (64%-85% across items); most opposed PGT for trait selection (76%-81%). Most respondents agreed that PGT aids in parental decision-making (66%-67%), although some expressed concern over potential unforeseen consequences (25%-30%). Regarding disposition of embryos without known genetic abnormalities, most respondents favored freezing indefinitely (86%) or donating to another family (69%), while for embryos with genetic abnormalities, most respondents favored donating to research (78%) or destroying them (62%). Stratification by religious affiliation revealed several differences, such as less acceptance of PGT for diseases that occur in adulthood and have no treatment options among Protestants (p = .015) and greater willingness to donate surplus embryos to research among participants without a religious affiliation (p < .001). These results are limited by the relatively homogeneous sample of participants (mostly White, married, and predominantly college-educated). In summary, participants who considered/used PGT found PGT acceptable overall for screening for disease conditions; most opposed using PGT for trait selection. Our novel questionnaire provides a structured tool for assessing the ethical perspectives surrounding the use of PGT.

Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing.

OBJECTIVE: To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT). METHODS: The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months. RESULTS: N = 106 females (mean age 36.5 ± 4.8 years; 16% non-Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92-0.94) and displayed sufficient inter-individual variability (SD's 0.75-0.89). Correlations confirmed expected patterns of association between instruments (P's < .01), indicating discriminant validity. CONCLUSION: We document initial reliability and validity of new instruments to measure emotional distress and uncertainty in female patients who have recently considered PGT for single-gene or chromosomal disorders.

Once you're choosing, nobody's perfect: is more information necessarily better in oocyte donor selection?

Despite a growing body of research examining the psychosocial issues involved in oocyte donation, few studies have examined the role of information in the process of donor selection. The aim of this interview-based qualitative study was to understand how donor oocyte recipients relate to information provided about potential oocyte donors, how they use this information to select donors and their preferences for, and reactions to, various types of information provided to them. Donor oocyte recipients who underwent treatment between 1995 and 2011 were recruited for participation from an academic centre for reproductive medicine. Twenty-two oocyte donor recipients participated. Findings indicate that recipients use information to select donors who they believe would enable them to fulfill their priorities: having a healthy child and 'passing' as genetically related. Obtaining more specific information prompted a focus on donor imperfections and presented a burden of choosing. Moreover, for participants preferring distance, having more information created dilemmas by making the donors less abstract. Although more information and options are often desired by oocyte donor recipients, increased choice can also present psychological dilemmas and emotional costs. Further research is needed to investigate the influence of information-related conflicts on patient decision-making, post-treatment emotional adjustment and disclosure decisions.

The integration of the cancer experience into identity: Perspectives from young adults.

The study explored how young adults with cancer create a cancer identity across the illness trajectory. Young adults with hematological cancers (n = 53, ages 20-39) completed a semi-structured interview and brief questionnaire. Deductive thematic analysis was used to code interviews. Four identity categories (Acceptance, Enrichment, Engulfment, and Rejection) were coded and linked to the cancer stage (pre-treatment, active treatment, post-treatment). Pre-treatment, there was minimal expression about identity. Acceptance during active treatment involved identity work around disclosure and the integration of pre-cancer identity with the treatment experience. Post-treatment, acceptance involved actively making sense of the cancer experience and its long-term impact; Enrichment was more frequent post-treatment. Engulfment was expressed most during treatment. Individuals who remained engulfed post-treatment expressed difficulties moving beyond the patient's identity. Rejection of a cancer identity was rarely expressed. Understanding how young adults integrate the cancer experience into their identity may suggest intervention strategies.

Stigma and mental health in endometriosis.

This review provides an overview of patient experiences of endometriosis, endometriosis-related types and sources of stigma pertaining to menstruation, chronic pain, and infertility, and their impact on patients' mental health with particular implications for patient care. Because endometriosis is a complex disease with multifactorial etiology, complicated pathophysiology, and a spectrum of clinical features, diagnosis of endometriosis is typically a lengthy process, and many patients experience initial misdiagnosis. A hallmark symptom is severe menstrual pain with other symptoms including chronic pelvic pain, dysmenorrhea, and infertility. Prior research documents that the diagnostic odyssey, complex management, disabling and unpredictable nature of the disease, and painful symptom profile affect multiple life domains of patients, resulting in poor physical, social, and psychological functioning and clinically-significant rates of anxiety and depression for many. More recently, stigma has been recognized as a potent contributor to poor mental health in endometriosis patients, but existing research is limited and largely atheoretical. We identify major sources of stigma related to endometriosis, including menstrual stigma, chronic pain stigma, and infertility stigma, and their likely impact on patients and health care provision. An integrative theoretical approach is described to facilitate research on the prevalence and effects of endometriosis stigma and their explanatory mechanisms, highlighting specific well-validated psychological instruments to assess stigma. Implications for patient care are emphasized. Better understanding of stigma and mental health in people with endometriosis will enhance the standard of care for this patient population.

Gender representation of cancer patients in medical treatment and psychosocial survivorship research: changes over three decades.

BACKGROUND: Prior studies raise concern about gender bias in cancer research, including insufficient inclusion of women or men, or studying women and men differently. The 1993 National Institutes of Health Revitalization Act aimed to eliminate gender bias in medicine. To examine changes in medical and psychological literature, this study reviews gender representation in biomedical treatment studies and psychosocial survivorship studies published in a single year. METHODS: Research published in Cancer in 2007, and all empirical psychological studies about cancer published that year, provided a 15-year update to findings reported by Meyerowitz and Hart. The gender distribution and context of included articles were coded and compared with findings from 1983 and 1992. RESULTS: Across biomedical studies, 34.3% of subjects were women (vs 47% of new cancers and 48% of cancer deaths). Among men, 41.3% had sex-specific cancers (vs 12.5% [1983] and 12.3% [1992]). Among women, 46.1% had sex-specific cancers (vs 69.1% [1983] and 64.6% [1992]). Fewer women (36.8%) were represented in sex-nonspecific cancer studies (vs 41.4% [1983] and 42.5% [1992]); however, fewer studies had a significant (>20%) gender disparity. Across psychosocial studies, representation of men increased to 47.9% (vs 30.4% [1983] and 29.9% [1992]). The proportion of men in studies of feelings/relationships increased to 47% (vs 22.9% [1992]); the proportion of women in studies assessing physical/functional ability increased to 58.3% (vs 45.4%). CONCLUSIONS: Women remain under-represented in sex-nonspecific biomedical research, whereas men's representation in sex-specific research increased substantially. Psychosocial research trends suggest movement from research questions supporting traditional stereotypes that women feel and men act.

Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.

BACKGROUND: Studies have shown that BRCA1/2 mutation carriers are interested in learning about reproductive options such as preimplantation genetic diagnosis (PGD) to prevent passing their risk onto their children. However, attitudes vary widely, and the procedure raises complex ethical and psychosocial issues. This complexity, plus the highly technical nature of PGD, makes it difficult to integrate PGD information into genetic counseling sessions that already cover probabilistic, emotionally charged risk information. METHODS: A total of 33 carriers of the BRCA1/2 mutation who were of reproductive age and had previously undergone genetic counseling viewed a tutorial regarding PGD and were interviewed concerning their attitudes toward PGD and preferences about how to include PGD information in genetic counseling. RESULTS: The majority of participants preferred to be briefly informed of the availability of PGD information, and to receive written materials regarding PGD, but with the option of deferring detailed discussion if they already believed themselves to be overloaded or perceived that PGD was not immediately relevant to their risk management and/or childbearing plans. For some individuals, the stress of testing temporarily interfered with information processing, producing states of cognitive avoidance ("in a fog," or "tuning out"). Some preferred to discuss PGD with a physician with whom they had an ongoing relationship (eg, obstetrician/gynecologist, primary care provider, or oncologist). CONCLUSIONS: Providers offering cancer genetic testing may consider indicating the availability of PGD information to their patients, while attending to the patients' level of interest and ability to absorb information. Research is needed to link patient responses to information overload with psychosocial outcomes (eg, distress, and quality of decision-making). Continuing medical education is needed to support providers in facilitating informed decisions regarding PGD.

Illness Uncertainties Tied to Developmental Tasks Among Young Adult Survivors of Hematologic Cancers.

PURPOSE: Young adulthood is a period of building autonomy, relationships, and careers. Experiencing cancer as a young adult (YA) is an "off-time" event in the normative adult life cycle and may interrupt age-specific goals. The majority of prior research on illness uncertainty centers on medical concerns about recurrence or mortality. The current study identifies how YA survivors of hematologic cancers, an understudied group, experience illness uncertainties related to the developmental tasks of young adulthood. METHODS: This is a qualitative study of 53 YA hematologic cancer survivors, ages 20-39. Participants completed hour-long semistructured interviews about psychological, social, and treatment-related aspects of their cancer experience. Interviews were transcribed and coded using an abductive approach to qualitative analysis. RESULTS: Most participants (80%) spontaneously described at least one illness uncertainty tied to developmental tasks. Fertility was the most commonly reported type of uncertainty (55%), with more women than men reporting it, followed by family and intimate relationships (43%), peers and social life (36%), and academic or career goals (26%). These uncertainties were described with reference to the off-time nature of illness. Example excerpts are provided and interpreted. CONCLUSIONS: These findings have the potential to advance our understanding of the cancer experience of YA survivors by expanding on the notion of illness uncertainty in this population. Given the extent to which uncertainties related to developmental tasks were reported, tailored interventions targeting these concerns may improve quality of life among YAs with hematologic cancers.

"I want us to be a normal family": Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients.

BACKGROUND: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program and to understand the ways in which anonymity functions for them. METHODS: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States. RESULTS: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future. CONCLUSION: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options.

Psychological Aspects of Contraception, Unintended Pregnancy, and Abortion.

The knowledge of important biopsychosocial factors linking women's reproductive health and mental health is increasing. This review focuses on psychological aspects of contraception, unintended pregnancy, and abortion because these are common reproductive health experiences in U.S. women's lives. This review addresses the mental-health antecedents and consequences of these experiences, mostly focusing on depression and depressive symptoms before and after unintended pregnancy and contraception. As mental-health antecedents, depressive symptoms predict contraceptive behaviors that lead to unintended pregnancy, and mental-health disorders have been associated with having subsequent abortions. In examining the mental-health consequences, most sound research does not find abortion or contraceptive use to cause mental-health problems. Consequently, evidence does not support policies based on the notion that abortion harms women's mental health. Nevertheless, the abortion-care setting may be a place to integrate mental-health services. In contrast, women who have births resulting from unintended pregnancies may be at higher risk of postpartum depression. Social policies (e.g., paid maternity leave, subsidized child care) may protect women from mental-health problems and stress of unplanned children interrupting employment, education, and pre-existing family care responsibilities.

'The BRCA clock is ticking!': negotiating medical concerns and reproductive goals in preimplantation genetic diagnosis.

Despite research on BRCA1/2 mutation carriers attitudes towards preimplantation genetic diagnosis (PGD), considerably less is known about individuals' experience with its use. Through case reports of BRCA1/2 mutation carriers' thoughts on, and use of, PGD, this paper highlights how the option of PGD is experienced and negotiated in the context of reproductive and life-course goals. Drawing on qualitative interviews with 38 BRCA1/2 mutation carriers, this article focuses on a subsample of 10 interviewees who sought consultation for, and/or attempted, PGD, with in-depth reports of 3 cases and summary decisions of the remaining 7. Three couples decided against PGD, and one was deciding at the time of the interview. Interviewees discuss key aspects of their experience prior to, and going through, PGD for BRCA1/2, including potential challenges of becoming pregnant through PGD and of heightened pressure to achieve their reproductive goals more quickly. Despite considerable focus on ethical issues in screening embryos for mutations associated with adult-onset cancer risk, less attention has been paid to the technical, logistical, and related psychosocial issues. Narrative case reports may help individuals develop appropriate expectations of PGD for BRCA prepare for possibly challenging decisions and outcomes, and ultimately determine whether it is compatible with their reproductive goals.

'Use what God has given me': difference and disparity in breast reconstruction.

African-American women are significantly less likely to undergo postmastectomy breast reconstruction compared to white women in the USA. These observed differences have been interpreted as evidence of a healthcare disparity. The current study examines breast reconstruction decision-making among African-American women, locating reconstruction decisions in a context of culture, racial inequality and biomedicalisation. Semi-structured interviews were conducted with 27 African-American women who underwent mastectomy for breast cancer to add patient-centred perspectives to existing conceptualisations of racial/ethnic differences in reconstruction. Participants were socio-demographically diverse, and resided in the New York metropolitan area. Data analysis was informed by grounded theory. Spiritually and culturally informed body ethics often guided surgery decisions. Participants expressed reservations about breast implants, preferring autologous procedures that use 'what God has given'. For some, breast reconstruction restored a sense of normalcy after cancer; others challenged an imperative to reconstruct. Several participants redirected our focus on access to reconstruction toward access to alternatives, noting the low reimbursement for prostheses, or their unavailability in patients' skin tones. We suggest that a framework of 'stratified biomedicalization' better addresses the complexities of race, class and gender that inform preference, access and recommendations for breast reconstruction, and focuses attention on access to high and low-tech interventions.

HIV/AIDS-related institutional mistrust among multiethnic men who have sex with men: effects on HIV testing and risk behaviors.

OBJECTIVE: To investigate relationships between institutional mistrust (systematic discrimination, organizational suspicion, and conspiracy beliefs), HIV risk behaviors, and HIV testing in a multiethnic sample of men who have sex with men (MSM), and to test whether perceived susceptibility to HIV mediates these relationships for White and ethnic minority MSM. METHOD: Participants were 394 MSM residing in Central Arizona (M age = 37 years). Three dimensions of mistrust were examined, including organizational suspicion, conspiracy beliefs, and systematic discrimination. Assessments of sexual risk behavior, HIV testing, and perceived susceptibility to HIV were made at study entry (T1) and again 6 months later (T2). RESULTS: There were no main effects of institutional mistrust dimensions or ethnic minority status on T2 risk behavior, but the interaction of systematic discrimination and conspiracy beliefs with minority status was significant such that higher levels of systematic discrimination and more conspiracy beliefs were associated with increased risk only among ethnic minority MSM. Higher levels of systematic discrimination were significantly related to lower likelihood for HIV testing, and the interaction of organizational suspicion with minority status was significant such that greater levels of organizational suspicion were related to less likelihood of having been tested for HIV among ethnic minority MSM. Perceived susceptibility did not mediate these relationships. CONCLUSION: Findings suggest that it is important to look further into the differential effects of institutional mistrust across marginalized groups, including sexual and ethnic minorities. Aspects of mistrust should be addressed in HIV prevention and counseling efforts.

"My funky genetics": BRCA1/2 mutation carriers' understanding of genetic inheritance and reproductive merger in the context of new reprogenetic technologies.

Deleterious mutations in the BRCA1/BRCA2 genes elevate lifetime risk of breast and ovarian cancer. Each child of a mutation-positive parent has a 50% chance of inheriting it. Preimplantation genetic diagnosis (PGD) permits prospective parents to avoid the birth of a BRCA-mutation-positive child, introducing predictability into a process historically defined by chance. This investigation explored how BRCA1/2 mutation carriers understand genetic inheritance and consider a child's inheritance of a BRCA1/2 mutation, given the opportunities that exist to pursue PGD. Thirty-nine female and male BRCA1/2 mutation carriers of reproductive age were recruited from urban cancer and reproductive medical centers. Participants completed a standardized educational presentation on PGD and prenatal diagnosis, with pre- and posttest assessments. An interdisciplinary team of qualitative researchers analyzed data using grounded theory techniques. Participants expressed the belief that reproduction yields children with unique genetic strengths and challenges, including the BRCA1/2 mutation, family traits for which predictive tests do not exist, and hypothetical genetic risks. Participants expressed preference for biologically related children, yet stated their genetically "well" partner's lineage would be marred through reproductive merger, requiring the well partner to assume the burden of the BRCA1/2 mutation via their children. Participants expressed diverse views of genetically "well" partners' participation in family planning and risk management decisions. Pressure to use reprogenetic technology may grow as genetic susceptibility testing becomes more widely available. Work with individuals and couples across the disease spectrum must be attuned to the ways beliefs about genetic inheritance play into reproductive decision-making.

Measuring and managing patient expectations for breast reconstruction: impact on quality of life and patient satisfaction.

The goal of postmastectomy breast reconstruction is to restore a woman's body image and to satisfy her personal expectations regarding the results of surgery. Studies in other surgical areas have shown that unrecognized or unfulfilled expectations may predict dissatisfaction more strongly than even the technical success of the surgery. Patient expectations play an especially critical role in elective procedures, such as cancer reconstruction, where the patient's primary motivation is improved health-related quality of life. In breast reconstruction, assessment of patient expectations is therefore vital to optimal patient care. This report summarizes the existing literature on patient expectations regarding breast reconstruction, and provides a viewpoint on how this field can evolve. Specifically, we consider how systematic measurement and management of patient expectations may improve patient education, shared medical decision-making and patient perception of outcomes.

"Whatever feels good in my soul": body ethics and aesthetics among African American and Latina women.

Ethnicity-specific differences in body aesthetic ideals and body satisfaction have been cited as a potential explanation for interethnic differences in the prevalence and presentation of eating disorders. It has been widely hypothesized that such ethnically based differences in aesthetic body ideals mitigate cultural pressures that contribute to body disparagement and disordered eating among white women. However, mechanisms by which a cultural milieu may be protective against the development of disordered eating remain poorly understood. This study investigated relationships among ethnicity, self-representation, and body aesthetic ideals among 18 college-educated black and Latina women through analysis of focus group discussion data. Rather than confirming body aesthetic ideals different from those of white culture, study respondents reframed the discussion about body aesthetics to one of body ethics. That is, study subjects both contested ideologies defining thinness and whiteness as inherently beautiful and espoused a body ethic of self-acceptance and nurturance that rejects mainstream cultural pressures to reshape bodies to approximate aesthetic ideals promulgated in the media. We conclude that understanding body image concerns from the standpoint of body ethics, rather than body aesthetics, may be a more productive and inclusive approach to the study of ethnically diverse women's embodied experience. Ultimately it is anticipated that this will better illuminate the complex relationships among ethnicity, culture, and risk for body image and eating disorders.