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Sigma Theta Tau International Alpha Lambda Chapter Understanding Fertility Decisions in the 21st Century: The Use of Emerging Technologies in Reproduction And Genetics Patricia E. Hershberger, PhD, APRN, BC University of Illinois at Chicago Assistant Professor College of Nursing March 6, 2009 “Infertility” The simple union of man and wife In love creates a brand new life. A child to cherish, play with and be Their link with immortality. What bliss and joy they anticipate Unless infertility becomes their fate. And buries dreams that die within As they mourn their child who might have been. --- Mache Seibel, MD Definitions Fertility is… The ability of a man and a woman to reproduce Infertility is… A lack of fertility Involuntary childlessness A reduction in the ability to establish pregnancy or to carry a baby to term Commonly known as the “inability to conceive after one year of unprotected intercourse” Sterility is… The absolute inability to reproduce Incidence of Infertility In the U.S. about 10-15% of the 62 million women of reproductive age in 2002 had difficulty getting pregnant or carrying a baby to term. About 1.2 million of these women (or 2%) sought medical care for infertility. Infertility increases with age. Maximum fertility is at age 15-24 years. Chandra et al., 2005 CDC, 2008 12th Report issued under the 1992 Congressional Act requiring the CDC to publish pregnancy success rates for fertility clinics in the U.S. Centers for Disease Control and Prevention (CDC), 2008 CDC, 2008 Study I Pregnant, Donor Oocyte Recipients Study I Pregnant, Donor Oocyte Recipients Gametes Sperm + Oocyte (Egg) = Not Conceiving; Infertile + (Want-to-be Father) (Want-to-be Mother) Donor Oocyte Treatment + + IVF + = Want- Oocyte Want-to- to-be- Aleta St. James Donor be Mom Father & Her Twins Study I Pregnant, Donor Oocyte Recipients Purpose Describe the Lived Experience of Pregnant, Donor Oocyte Recipient Women Three Aims Explicate the Overall Lived Experience Explore Disclosure Decisions Examine Caring Behaviors Design Phenomenology (Colaizzi, 1978; Husserl, 1931/1962) Recruitment & Data Collection Large Urban Infertility Clinic Face-to-Face Interviews Study I Pregnant, Donor Oocyte Recipients: Sample Eight women Between 9 and 23 Gestational Weeks Age Range = 33-46 years (mean = 40.6 years) Caucasian, Married, Well-educated Primiparae Sperm of Spouse 5 Women = Twin pregnancies 3 Women = Singleton pregnancies Results Themes ► Desiring Motherhood ► Accepting Donor Oocytes ► Deliberating Decisions ► Contemplating Disclosure ► Looking to the Future Theme: Accepting Donor Oocytes Experience ranged from calmness to shock and disbelief Importance of genetic lineage Perception of advantages and disadvantages Realization of changing values Hershberger, 2007 Theme: Deliberating Decisions Select Donor Anonymous Known Select Disposition of Extra (Cryopreserved) Embryos Hershberger, 2007; Hershberger & Kavanaugh, 2008 Theme: Contemplating Disclosure Inform Others ? Inform Child ? Disclosure Decision Influenced by Multiple Factors ► Women’s Values and Beliefs Right to know Duty to protect ► Social and Cultural Environment Social support Culture of the family Hershberger, Klock, & Barnes, 2007 Study II: Preimplantation Genetic Diagnosis (PGD) Preimplantation Genetic Diagnosis: Biopsy Procedure 3 Day Embryo (8 cells) Photos courtesy of Joan Scott, Deputy Director Genetics & Public Policy Center Washington, DC Study II: Preimplantation Genetic Diagnosis Background & Trajectory Began in 1990 as a new diagnostic procedure circumventing traditional prenatal diagnosis (Handyside et al., 1990; Verlinsky et al., 1990) Indications (Practice Committee of the Society for ART et al., 2008) History of inheritable genetic disorder Women 35 years or older (aneuploidy) ?? Women with recurrent pregnancy loss ?? (Mastenbroek et al. 2007) HLA typing to save a living child Critical social, ethical & public health issue Calls from scientific and practice communities for further research (Collins et al., 2003; Soini et al., 2006) Study II Preimplantation Genetic Diagnosis Purpose Examine the Decision Making Processes of Couples who have Accepted or Declined the use of PGD Design Grounded Theory (Glaser & Strauss, 1967) “Think-Aloud” Technique (Ericsson & Simon, 1980) Recruitment & Data Collection Large Urban Infertility Clinic, Newsletters, & Internet Telephone & E-mail Interviews Systematic Review of Couples’ Decision Making Surrounding PGD Design for PGD Review Dyadic Human Focus (couples) Search Strategies and Analysis (Cooper, 1998) Used electronic databases, ancestry approaches, and citation index searching Targeted empirical reports that included couples or individual partners who had either used, were eligible for, or had contemplated PGD Included empirical reports of providers and also commentaries, professional guidelines, policy reports and other reviews Emerging Dimensions of Couples’ Decision Making Cognitive Emotional Moral Appraisals Responses Judgments • Success Rates • Pain and Suffering •Status of the Embryo • Procedural Risks • Joy and Happiness •Technological Imperative • Human Risks •Disease and Disability and Safety Prevention • Financial Costs •Social Significance • Time •Application Preimplantation Genetic Diagnosis Decision Hershberger & Pierce, in review Cognitive Appraisals Cognitive Appraisals • Success Rates • Procedural Risks • Human Risks and Safety • Financial Costs • Time Cognitive Appraisals Success Rates (Lavery et al., 2002; Pergament, 1991) 35% rate for IVF in US (CDC, 2008) 15% rate for PGD worldwide (Harper et al., 2008) Rates differ for application Center-to-center differences (Grace et al., 2006) Procedural Risks (Kalfoglou et al., 2005b) Misdiagnosis and undiagnosis (Lewis et al., 2001) Affected embryo transferred, misdiagnosed as normal 2% Recessive disorders 11% Dominant disorders Cognitive Appraisals (continued) Human Risks/Safety (Snowdon & Green, 1997; Lavery et al., 2002) Immediate (multiple gestation and preterm birth) Long-term (health of the child ??) Financial Costs (Inhorn & Fakih, 2006; Kalfoglou et al., 2005a) $10,000 to $14,000 US Dollars (IVF) (ASRM, 2008; Galpern, 2007) $2,500 to $5,000 US Dollars (PGD) (Galpern, 2007) Time (Snowdon & Green, 1997; Roberts & Franklin, 2004; Zeiler, 2004) Pressure to establish pregnancy Age of individuals Counseling, education, and provision of care Emotional Responses Emotional Responses • Pain and Suffering • Joy and Happiness Emotional Responses Pain and Suffering (Chamayou et al., 1998; Hui et al., 2002; Henneman et al., 2001; Kalfoglou et al., 2005b; Lavery et al., 2002; Palomba et al., 1994; Pergament, 1991; Roberts & Franklin, 2004; Snowdon & Green, 1997; Zeiler, 2004) Most often cited reason Emotional trauma of couple and their offspring Joy and Happiness (Kalfoglou et al., 2005a; Menon et al., 2007; Snowdon & Green, 1997) Experiencing parenthood Raising a healthy genetically linked child Increasing the health of the child Moral Judgments Moral Judgments • Status of the Embryo • Technological Imperative •Disease and Disability Prevention • Social Significance • Application Moral Judgments Status of the Embryo (Fernández et al., 2004; Kalfoglou et al., 2005; Katz et al., 2002; Snowdon & Green, 1997) Manipulating, freezing, or discarding embryos Technological Imperative (Kalfoglou et al., 2005a; Snowdon & Green, 1997; Zeiler, 2004) Unnatural or playing God versus using technology (PGD) to determine outcome Disease and Disability Prevention (Kalfoglou et al., 2005b) Issues of justice, stigma and discrimination (Freeman, 1996; Vergeer et al., 1998) Opportunity for health and success (Savulescu, 2001, 2007) Moral Judgments (continued) Social Significance (Kalfoglou et al., 2005a; Viville & Pergament, 1998) Concern over eugenic potential “Neoeugenics” (Suter, 2007) Application (Alsulaiman & Hewison, 2006; Kalfoglou et al., 2005a; Krones et al., 2005; Meister et al., 2005; Williams et al., 2007). Based on the underlying reason for using PGD Study III Fertility Preservation Study III Fertility Preservation Purpose Describe the Decision Making Processes of about 30 Women, age 18 to 43 years, who are Facing a Life Threatening Illness and are choosing to either Accept or Decline Fertility Preservation Treatment (i.e., oocyte, embryo, ovarian cryopreservation) Design Qualitative, Naturalistic Recruitment & Data Collection Large Urban Infertility Clinic, Support Groups & Internet Face-to-Face, Telephone, & E-mail Interviews • How do emerging technologies in reproduction and genetics/genomics shape the lives of women and couples? Society? • How can nurses, advanced practice nurses, and nurse scholars improve patient decision making within repro- genomics? • What are the influences and responsibilities of health care providers, society, and policymakers within repro- genomics?
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