Oncofertility (eBook)

Teresa Woodruff, Ph.D. – Teresa K. Woodruff, Ph.D. is a Thomas J. Watkins Professor of Obstetrics & Gynecology at the Northwestern University Feinberg School of Medicine and Professor of Biochemistry, Molecular Biology and Cell Biology in the Weinberg College of Arts and Sciences. She is the Chief of a newly created Division of Fertility Preservation and the Founder and Director of the Institute for Women’s Health Research. She is the immediate past Director of the Basic Science Programs for the Robert H. Lurie Comprehensive Cancer Center (2000-2007). She is the basic science Associate Editor for Fertility and Sterility (2008-present) and member of several editorial boards including Molecular Cellular Endocrinology, Journal of Molecular Endocrinology and Endocrine Reviews. She serves on the Endocrine Society council (2008-present) and the Society for the Study of Reproduction Board of Directors (2008-present). Her awards include the Distinguished Teaching Award from Northwestern University, the Endocrine Society’s Richard E. Weitzman Memorial Award, The Alumae Award from Northwestern University, and the Distinguished Women in Medicine and Science Award. She was elected a fellow of the American Association for the Advancement of Science in 2005. As a member of the faculty of the Undergraduate Program in Biological Sciences, Dr. Woodruff teaches graduate and undergraduate students in Systems Physiology and the medical student module on female reproduction. She also created the Oncofertility Saturday Academy (OSA) to provide science experiences to high school girls attending the Young Women’s Leadership Charter School (YWLCS). She received her PhD from Northwestern University in 1989. Dr. Woodruff has published more than 100 peer-reviewed papers as well as 40 editorials and book chapters. She is the Principal Investigator on 2 R01 NIH grants, a P01 grant and core facility, and is the PI and director of two NIH funded center grants (The Center for Reproductive Research (U54) and the Oncofertility Consortium (UL1). In 2008 she was the recipient of a prestigious W.M. Keck Foundation Medical Research award (2008). The major goals of her laboratory are to identify the mechanisms underlying ovarian follicle development, selection and recruitment and to provide new angles on ovarian disease and fertility conserving options for women. Dr. Woodruff has established a team of oncologists, fertility specialists, social scientists, and education and policy makers to translate her research to the clinical care of women who will lose their fertility due to cancer treatment. She coined the term oncofertility to describe this work, a word that is now officially recognized as a new 'slang' term in the English language. She edited the first book on this topic called Oncofertility (Springer, 2007) where the scope of the problem and current technology, clinical practice tables, procedural guidelines and patient stories are collected. Hallmarks of Woodruff career include a strong focus on ovarian biology, on interdisciplinary approaches to problems and application of the work to the human. Laurie Zoloth, Ph.D. – Laurie Zoloth is a Professor of Medical Humanities, Bioethics, Jewish Studies and Religion. She is also the Director of the Northwestern University Center for Bioethics, Science and Society, and Director of the Brady Program for Ethics and Civic Life, in the Weinberg College of Arts and Sciences. In 2009 she was appointed as the Charles Deering McCormick Professor for Excellence in Teaching. Lisa Campo-Engelstein, Ph.D. – Senior Research Fellow, Oncofertility Consortium and Center for Bioethics, Science and Society Sarah Rodriguez, Ph.D. – Senior Research Fellow, Oncofertility Consortium and Center for Bioethics, Science and Society

Preface 4
References 5
Contents 7
Contributors 11
Part I The Science and Technology of Oncofertility 16
1 Reproductive Health After Cancer 17
Introduction 17
Gonadotoxicity of Treatments 17
Fertility 18
Contraception 19
Menopausal Symptoms 20
Sexual Function 20
References 21
2 Designing FollicleEnvironment Interactions with Biomaterials 24
Introduction 24
Extraovarian Interactions 26
Introduction to Mass Transport in Hydrogels 27
Ovarian Tissue Interactions 28
Designer Environments for Follicle Culture 29
Modification of Synthetic Biomaterials for Follicle Culture 30
Incorporation of Natural Biomaterials for Follicle Culture 31
Interactions with the Mechanical Environment 32
Conclusion 35
References 35
3 Gamete Preservation 38
Introduction 38
Organization of Gametes in the Human Ovary 38
Cryopreservation Techniques 40
Embryo and Oocyte Cryopreservation 42
Experimental Options for Gamete Preservation 44
Ovarian Tissue Cryopreservation and Transplantation 44
In Vitro Follicle Cryopreservation and Maturation 45
Conclusion 47
References 48
4 To Transplant or Not to Transplant That Is the Question 53
Introduction 53
Transplant Technologies and Their Success 54
Surgical Technique 55
Ovarian Tissue Vitrification 56
Preserving Fertility in Cancer Patients 57
Recent Progress on Culturing Follicles In Vitro 60
Conclusions and Final Thoughts 62
References 63
5 Clinical Cases in Oncofertility 67
Introduction 67
Clinical Scenario 1 67
Use of GnRH Antagonist for Luteolysis and Cycle Synchronization 68
GnRH Agonist Trigger to Prevent OHSS 68
Oocyte Cryopreservation 69
Clinical Scenario 2 70
Ovarian Stimulation with Aromatase Inhibitors 70
Combined Embryo and Oocyte Cryopreservation 71
Anticoagulation with IVF Stimulation 72
Clinical Scenario 3 72
Ovarian Tissue Cryopreservation 73
Clinical Scenario 4 74
Gonadotoxicity of Cancer Therapy 74
Ovarian Transposition 75
Selecting More than One Fertility Preservation Option 75
Conclusions 76
References 76
6 Cancer Genetics: Risks and Mechanisms of Cancer inINTtie Women with Inherited Susceptibility to EpithelialOvarian Cancer
Introduction 80
Epithelial Ovarian Cancer 81
Heritable Cancer Syndromes and EOC 83
Genetic Mechanisms 83
Heritable Cancer Syndromes and EOC 84
Hereditary Breast and Ovarian Cancer (HBOC) 84
Site-Specific Ovarian Cancer 87
Lynch Syndrome 88
Other Genetic Syndromes Associated with EOC 91
Counseling of Women at Increased Risk for Developing EOC 92
Conclusions 94
References 95
7 Protecting and Extending Fertility for Females of Wild and Endangered Mammals 97
Introduction 97
Value of Reproductive Studies and Fertility Preservation for Rare and Wild Species 98
Value of Animal Models for Preserving and Extending Fertility in Wild Species 100
Ways by Which Oocyte and Embryo Culture in Domestic Animals and Humans Can Help Preserve and Extend Fertility in Females of Wild Species 101
Oncofertility Preservation Approaches that Have Special, Potential Value for Wildlife 103
Ovarian Tissue Cryopreservation 103
Ovarian Tissue Grafting 104
Follicle In Vitro Culture 105
Oocyte Preservation 105
Conclusion and Prospects 106
References 107
Part II Historical and Legal Perspectives 111
8 Placing the History of Oncofertility 112
References 118
9 Medical Hope, Legal Pitfalls: Potential Legal Issues in the Emerging Field of Oncofertility 120
Introduction 120
What Is at Stake 121
Is There a Right to Reproduce? 121
What Are the Reproductive Rights of Minors? 124
The Legal and Moral Questions 124
Who Can Consent to a Medical Procedure and What Are the Limits? 124
Are There Limitations to Proxy Consent in the Reproductive Context? 127
Male Circumcision 127
Female Genital Cutting 128
Sex Assignment Surgery 129
Sterilization 129
Variations in Parental Consent Requirements 130
How Does Current Law on Proxy Consent Apply to Oncofertility? 130
Is Failing to Preserve Fertility the Same as Active Sterilization? 132
Who Controls the Fate of the Excised Tissue While the Patient Is Alive? 134
Who Controls the Fate of the Excised Tissue When the Patient Is Dead? 135
Can Research on the Tissue Be Conducted and if So, What Steps Must the Researchers Take? 138
Are There Additional Concerns? 139
Conclusion 140
References 140
10 Domestic and International Surrogacy Laws: Implications for Cancer Survivors 144
Introduction 144
The Inability to Gestate Due to Cancer and Cancer Treatment 145
Types of Surrogacy 146
Surrogacy Laws in the United States 148
International Surrogacy Laws 152
Free Market 152
Regulated 155
Prohibition 156
Options for Cancer Survivors: Surrogacy Tourism 157
Conclusion 159
References 160
11 Adoption After Cancer: Adoption Agency Attitudes and Perspectives on the Potential to Parent Post-Cancer 162
Introduction 162
Adoption in the United States 163
Adoption and the Law: United States 164
Existing Discrimination in the Adoption Process 166
Interpreting the Law: Adoptive Potential of Cancer Survivors 167
Methods 168
Results 169
Discussion 172
Expanding the Discussion: The Experience of Potential Adoptive Parents 175
Defining the Discrimination 176
Conclusions 177
References 178
Part III Clinical and Theoretical Ethics 180
12 Ovarian Tissue Cryopreservation and Bioethical Discourse 181
Introduction 181
Medical Solutions to Social Problems 182
Making Room for a Language of Care 182
Replacing Present Operations with Future Vocations 184
Adaptation or Transformation 185
The Patients Best Interest 186
References 188
13 The Lessons of Oncofertility for Assisted Reproduction 189
Introduction 189
How Is Cancer-Related Infertility Different from All Other Infertility 190
References 194
14 Morally Justifying Oncofertility Research 195
Introduction 195
Why Do the Research 195
Conclusion 200
References 201
15 Ethical Dilemmas in Oncofertility: An Exploration of Three Clinical Scenarios 203
Introduction 203
Case 1: Description 204
Who Should Make Decisions in Adolescent Medical Care: Adolescent Patients or Parents? 204
Should a Physician Abide by or Reject Different Cultural Traditions with Respect to Disclosure and Medical Decision Making? 205
Case 2: Description 206
Should Cancer Patients with Poor Prognosis Be Allowed to Pursue Fertility Preservation or Should They Be Denied Treatment? 207
Should Physicians Discard Abandoned Frozen Embryos and Gametes or Continue Their Cryopreservation? 207
Case 3: Description 208
Should Patients with Medically Complicated Conditions Be Offered or Denied Methods to Preserve Fertility? 209
Theoretical Strategies 209
Practical Strategies 212
Specific Suggestions for Case 1 212
Who Should Make Decisions About Adolescent Medical Care and to What Extent Should Cultural Factors Play a Role in Informing Patients of Their Condition? 212
Specific Suggestions for Case 2 213
Should Cancer Patients with Poor Prognosis Be Allowed to Pursue Fertility Preservation? 213
What Should Be Done with Abandoned Frozen Embryos and Gametes? 213
Specific Suggestions for Case 3 214
Should Patients with Medically Complicated Conditions Be Offered Methods to Preserve Fertility? 214
Conclusion 214
References 215
16 Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach 217
Introduction 217
Feminist Approaches to ART and Biomedical Research 218
Oncofertility: Patients, Basic Research, and Clinical Research 219
Potential Participants in Investigational Fertility Preservation Research 219
Cancer Patients 220
Fertility Patients 222
Reproductive Oocyte Donors 223
Healthy Research Volunteers 224
Conclusions and Directions for Future Research 226
References 227
17 Reproductive Choice and Egg Freezing 230
Introduction 230
Disease-Related Versus Age-Related Egg Freezing 233
Goold and Savulescu on Timing and Cause 234
Objections to Goold and Savulescu 235
Why the Problem is Not So Easy to Fix and the Choice is Not So Voluntary 237
Discussion and Conclusion 240
References 241
18 The Impact of Infertility: Why ART Should Be a Higher Priority for Women in the Global South 243
Introduction 243
Why a Feminist Approach 244
The Deleterious Effects of Infertility for Women in the Global South 245
Africa 245
Asia 246
Middle East 246
Latin America 246
Global South Overall 247
The Big Objection: There Are More Important Priorities than Infertility 248
Three Responses to the Objection 248
Response 1: ART Need Not Be Expensive 248
Response 2: Justice and the Right to Reproduce 249
Response 3: Women's Development, Countries' Development 250
Infertility and Cancer 251
References 253
19 Oncofertility and Informed Consent: Addressing Beliefs, Values, and Future Decision Making 255
Introduction 255
The Belief that Fertility Is Preserved: Immediate Risk for Future Benefit 256
Emotional Implications of the Decision-Making Process 258
Future Decisions 260
Conclusion 262
References 263
Part IV Religious Perspectives 265
20 Bioethics and Oncofertility: Arguments and Insights from Religious Traditions 266
Introduction 266
Why Religion 267
Catholicism 268
Evangelical Christianity 270
Islam 273
Judaism 274
Hinduism 277
Buddhism 279
Conclusion 281
References 282
21 Sacred Bodies: Considering Resistance to Oncofertility in Muslim Communities 284
Introduction 284
The Narrative of Bodily Inviolability 286
Beyond Jurisprudence: Widespread Muslim Attitudes Toward the Body 288
The Clinicians Burden 290
22 Unlikely Motherhood in the Qurn: Oncofertility as Devotion 292
Introduction 292
Mohammads Wives: Mothers of Believers 292
Islamic Law on Sex, Paternity, and the Right to Bear Children 294
Unlikely Conception as Divine Intervention: Sarah, the Wife of Zakhariah, and Mary 296
Conclusion 299
23 Technology and Wholeness: Oncofertility and CatholicTradition 300
Introduction 300
Part One 300
Part Two 304
Conclusion 310
References 310
24 Jewish Perspectives on Oncofertility: The Complexitiesof Tradition 312
Introduction 312
Stewardship and Technology 315
2003--2006: The Joseph Project 317
Who Was It that Said Yes Emerging Research, Truth Claims, and Identity as a Question in Jewish Bioethics 318
The Case 318
Humanities to the Rescue: The Text 320
The Recommendation: Here Is What I Wrote 321
Conclusion 322
References 322
Part V Ramifications for Education and Economics 323
25 The Oncofertility Saturday Academy: A Paradigmto Expand the Educational Opportunities and Ambitionsof High School Girls 324
Introduction 324
The Development of the Oncofertility Saturday Academy (OSA) 326
Practices of the Oncofertility Saturday Academy 328
Practice --1: High School--University Science Partnership Model 328
Partnership Role of NU 329
Partnership Role of YWLCS 330
Shared Partnership Roles of NU and YWLCS 331
Practice #2: Authentic and Relevant Science Learning Modules 331
Junior Oncofertility Saturday Academy (JOSA) Modules 333
Senior Oncofertility Saturday Academy (SOSA) Modules 334
Practice #3: Science Mentor and Support Network 336
OSA Supports Students, Parents, and Faculty Development 337
Practice #4: Web-Based Science Communication Platform 340
Expandable and Sustainable 342
Expandability 342
Sustainability 343
Conclusion 344
References 346
26 MyOncofertility.org: A Web-Based Patient Education Resource Supporting Decision Making Under Severe Emotional and Cognitive Overload 348
Introduction 348
The Internet as a Powerful Tool for Patient Education 349
Fertility Preservation and Patient Education 350
Fertility Preservation Communication Barriers and Challenges 350
MyOncofertility.org Design Goals 351
The Use of Media 351
An Appropriate Design Motif 354
User Control and Participation 355
Applying Design Principles from MyOncofertility.org to Other Patient Education Web Sites 357
Insights from MyOncofertility.org Usage Data 359
Conclusion 363
References 363
27 Anticipating Ovarian Tissue Cryopreservation in the Health-Care Marketplace: A Willingness to Pay Assessment 365
Introduction 365
Fertility Preservation Options 366
Willingness to Pay 367
Survey Methods 368
Results 370
Discussion 371
Conclusions 371
References 372
28 Perspectives on Oncofertility from Demography and Economics 373
Introduction 373
Why Have Children in the Twenty-First Century 374
How Can Economic and Social Demography Help Us to Understand Oncofertility 375
Why Would Patients Pursue Fertility Preservation Rather than Adoption? 375
Risk, Information, and Uncertainty Reduction 375
Why Do Some Patients Pursue Fertility Preservation When It Is Unlikely that They Will Produce Usable Gametes or Survive to Use Them? 376
Value 376
Normative Life Course 376
Reference-Dependent Preferences 377
Who Should Make the Decision about Fertility Preservation When the Patient Is a Minor? 377
Utility, Maximizing Behavior, and Altruism 377
Salience of Available Information 378
Time Preferences and Time Perspective 379
Should the Public Support the Provision of Fertility Preservation Procedures and Services? 379
Externalities and Public Goods 379
Conclusion 380
References 381
29 For the Sake of Consistency and Fairness: Why Insurance Companies Should Cover Fertility Preservation Treatment for Iatrogenic Infertility 382
References 389
Part VI Repercussions of Oncofertility for Patients and Their Families 390
30 Healthcare Provider Perspectives on Fertility Preservation for Cancer Patients 391
Introduction 391
Oncologists 393
Adolescent and Pediatric Providers 396
Physician Studies 396
Nurse Studies 397
Conclusion 400
References 401
31 Counseling and Consenting Women with Cancer on Their Oncofertility Options: A Clinical Perspective 402
Introduction 402
The Challenges of Counseling Oncofertility Patients 402
The Oncofertility Patient--Clinician Dialogue 402
Risks of Cancer Care to a Woman's Future Fertility 402
Initiating the Discussion of Oncofertility Options 404
Established Oncofertility Options for Women: Embryo Banking 404
Success of Embryo Cryopreservation: Evidence from the Society for Assisted Reproductive Technology (SART) 405
Unknowns of Embryo Banking for Women with Cancer: Evidence from Embryo Cryopreservation Literature 406
Experimental Oncofertility Treatments: Oocyte Cryopreservation 407
Experimental Oncofertility Treatments: Ovarian Tissue Banking 408
Achieving Informed Consent in the Care of Oncofertility Patients 408
Conclusions 410
References 410
32 The Fertility-Related Treatment Choices of Cancer Patients: Cancer-Related Infertility and Family Dynamics 412
Introduction 412
Background Younger Women with Breast Cancer and Cancer-Related Infertility 413
Methods 414
Sample Recruitment 414
Sample Characteristics 415
Interview Procedures and Data Analysis 416
Findings The Interplay Between Infertility and Family Relationships 417
Who Is Your family? 417
Infertility Concerns -- Shows of Familial Support 418
Potential Infertility and Family Relationship Stress 419
Family Influence and Fertility-Related Decisions 422
Conclusion 425
References 426
33 Whose Future Is It Ethical Family Decision Making About Daughters Treatment in the Oncofertility Context 428
Introduction 428
Ethical Consent and Children 429
The Family Rule Approach 430
Family Communication and Ethical Decision Making: Issues and Complications 433
Parental Disagreement 434
Complicated Family Forms 435
A Child's Right to Options 435
Parental/Familial Rights to Options 436
Difficulties and Assumptions Inherent in Language Used by Biomedicine 437
Discussions at Time of Treatment 437
Discussions about Sexuality 438
Disclosing the Decision in the Future 439
Keeping the Topic a Secret 440
Decision Making Based on Current Child, Not Forecasted Adult Child 441
Conclusion 441
References 442
34 Choosing Life When Facing Death: Understanding Fertility Preservation Decision-Making for Cancer Patients 445
Framing the Paradox: Understanding Reproduction in Current Society 445
Motherhood in the Face of Cancer 447
Fatherhood in the Face of Disease 449
A Transgenerational Perspective 451
Decision-Making: Confronting Life and Death Simultaneously 452
Implications and Conclusions 454
References 455
Part VII Healthcare Provider Stories and Final Thoughts 457
35 Discussing Fertility Preservation with Breast Cancer Patients 458
Introduction 458
Case 1: A Young Patient Who Refused Fertility Preservation 460
Case 2: A Young Patient Who Desired Fertility Preservation 461
Conclusion 462
References 463
36 Warning: Google Can Be Hazardous to Your Health: Fertility Preservation Is an Important Part of Cancer Care 464
References 465
37 The Role of a Patient Navigator in Fertility Preservation 466
38 Judaism and Reproductive Technology 468
Introduction 468
Basic Tenets of Orthodox Judaism 469
Orthodox Jewish Legal System 470
Major Jewish Themes 471
The Most Important Two Commandments 471
Confusion Which Can Result from Attempting to Follow the Commandments 472
Infertility, IVF, Embryonic Stem Cells, Ovary Transplantation, and Judaism 473
Commandments in Conflict 473
Controversial Issues Such as Donor Gametes 474
Ovary (and Testicle) Transplantation 475
Torah and Science Do Not Conflict 476
References 476
39 Reading Between the Lines of Cancer and Fertility: A Providers Story 478
40 A Rewarding Experience for a Pediatric Urologist 482
41 Final Thoughts 483
Index 486