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Sigma Theta Tau International Alpha Lambda


									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

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
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 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
      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
   Describe the Lived Experience of Pregnant,
   Donor Oocyte Recipient Women
 Three Aims
   Explicate the Overall Lived Experience
   Explore Disclosure Decisions
   Examine Caring Behaviors
   Phenomenology (Colaizzi, 1978; Husserl, 1931/1962)
 Recruitment & Data Collection
   Large Urban Infertility Clinic
   Face-to-Face Interviews
Study I
Pregnant, Donor Oocyte Recipients:

  Eight women

    Between 9 and 23 Gestational Weeks
    Age Range = 33-46 years (mean = 40.6 years)
    Caucasian, Married, Well-educated
    Sperm of Spouse
    5 Women = Twin pregnancies
    3 Women = Singleton pregnancies
 ► Desiring Motherhood
 ► Accepting Donor Oocytes
 ► Deliberating Decisions
 ► Contemplating Disclosure
 ► Looking to the Future
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
Deliberating Decisions
   Select Donor
   Select Disposition of Extra (Cryopreserved) Embryos

Hershberger, 2007; Hershberger & Kavanaugh, 2008
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
 Preimplantation Genetic Diagnosis:
 Biopsy Procedure

             3 Day
            (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
      Examine the Decision Making Processes
      of Couples who have Accepted or Declined the use of PGD
       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

Hershberger & Pierce, in review
Cognitive Appraisals
    Cognitive Appraisals

       • Success Rates
      • Procedural Risks
      • Human Risks and
       • 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
   • 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,

     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.,

     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
   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)
    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?

• How can nurses, advanced practice nurses, and nurse
scholars improve patient decision making within repro-

• What are the influences and responsibilities of health
care providers, society, and policymakers within repro-

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