Cancer Treatment and Research SeriesEditor StevenT.Rosen RobertH.LurieComprehensive CancerCenter NorthwesternUniversity Chicago,IL USA Forfurthervolumes,goto http://www.springer.com/series/5808 · · Teresa K. Woodruff Laurie Zoloth · Lisa Campo-Engelstein Sarah Rodriguez Editors Oncofertility Ethical, Legal, Social, and Medical Perspectives 1 3 Editors TeresaK.Woodruff,Ph.D. LaurieZoloth,Ph.D. FeinbergSchoolofMedicine FeinbergSchoolofMedicine NorthwesternUniversity NorthwesternUniversity Chicago,IL,USA Chicago,IL,USA [email protected] [email protected] SarahRodriguez,Ph.D. LisaCampo-Engelstein,Ph.D. FeinbergSchoolofMedicine FeinbergSchoolofMedicine NorthwesternUniversity NorthwesternUniversity Chicago,IL,USA Chicago,IL,USA [email protected] [email protected] ISSN0927-3042 ISBN978-1-4419-6517-2 e-ISBN978-1-4419-6518-9 DOI10.1007/978-1-4419-6518-9 SpringerNewYorkDordrechtHeidelbergLondon LibraryofCongressControlNumber:2010932405 ©SpringerScience+BusinessMedia,LLC2010 Allrightsreserved.Thisworkmaynotbetranslatedorcopiedinwholeorinpartwithoutthewritten permission of the publisher (Springer Science+Business Media, LLC, 233 Spring Street, New York, NY10013,USA),exceptforbriefexcerptsinconnectionwithreviewsorscholarlyanalysis.Usein connectionwithanyformofinformationstorageandretrieval,electronicadaptation,computersoftware, orbysimilarordissimilarmethodologynowknownorhereafterdevelopedisforbidden. Theuseinthispublicationoftradenames,trademarks,servicemarks,andsimilarterms,eveniftheyare notidentifiedassuch,isnottobetakenasanexpressionofopinionastowhetherornottheyaresubject toproprietaryrights. Whiletheadviceandinformationinthisbookarebelievedtobetrueandaccurateatthedateofgoing to press, neither the authors nor the editors nor the publisher can accept any legal responsibility for anyerrorsoromissionsthatmaybemade.Thepublishermakesnowarranty,expressorimplied,with respecttothematerialcontainedherein. Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Preface Cancer affects millions of Americans annually. Men’s lifetime risk of developing cancerforallsitesis50%;women’slifetimeriskisjustover33%[1].Whilegener- ally cancer is perceived as a condition affecting the elderly, nearly 10% of those diagnosed are under the age of 45, which are typically considered prime child- bearing years [2]. Indeed, many of those diagnosed with cancer are still children. In 2006, an estimated 9,500 new cases of pediatric cancer were diagnosed in the UnitedStates[3].Becauseofrecentbreakthroughsandmoreaggressivetreatments, thesurvivalrateofthosediagnosedwithchildhoodcancerhasrisentoalmost80% [4]. One estimate is that by 2010 one of every 250 adults will be a survivor of childhoodcancer[5]. But while more aggressive treatments have meant more young people survive cancer, these treatments have also resulted in impaired fertility for some. Given thenumbersofchildrenandadultswithintheirchild-bearingyearsdiagnosedwith, treated for, and surviving cancer, the ability to biologically reproduce has become animportantissuewithinoncology.Oncofertilityhasemergedasawaytoaddress potential lost or impaired fertility in those with a history of cancer, with active biomedicalresearchthatisdevelopingnewwaystohelpthoseafflictedwithcancer preservetheirabilitytohavebiologicalchildren[6]. Fertility concerns have begun to emerge as a quality of life issue important to patients. In one study of cancer survivors, 76% of those who were childless expressedadesiretohavechildreninthefuture[7].Impairedfertilityasaresultof cancer treatment has negative psychological as well as physical effects. The exist- ingliteratureonwomenwhosefertilitywasimpairedasaresultofcancertreatment revealsanintensepsychologicaldistress;forthesewomen,“psychologicaldistress mayresultfrom,notonlythelossofthephysicalabilitytoconceive,butalsoasym- bolic loss of the option or idea of fertility, regardless of whether this would have beenacteduponorachievable”[8].Studiesonmenhaverevealedsimilarlevelsof long-termdistressovertheirimpairedfertilityasaresultofcancertreatments[9]. The previous book, Oncofertility: Fertility Preservation for Cancer Survivors, primarily concentrated on the medical and technological aspects of oncofertility [10]. What differentiates this book from the first edited collection is the focus on perspectives from those outside of “hard” science. To move beyond oncofertility as a science and medical technology and begin to address the social, legal, and v vi Preface ethical ramifications of this emerging field, we must give voice to scholars from thehumanitiesandsocialsciencestoengageinaninterdisciplinarydiscussion.This book,wehope,willbeginsuchadiscourse. Oncofertility: Ethical, Legal, Social, and Medical Perspectives emerged from a robustsummitthatoccurredinthesummerof2009,whichbroughttogetherschol- arsfromthehumanities,socialsciences,andthelaw,toexaminethecomplexissues raisedbyrecentdevelopmentsinthefieldofoncofertilityandtoprovideinterdisci- plinaryperspectivestohelpshapetheunderstandinganddeliveryofthisnewfield. The book opens with some background information on the science and technol- ogy of oncofertility. The majority of this book addresses the ethical, legal, and socialaspectsofoncofertilityandisdividedintofivesections:HistoricalandLegal Perspectives;ClinicalandTheoreticalEthics;ReligiousPerspectives;Ramifications forEducationandEconomics;andRepercussionsofOncofertilityforPatientsand their Families. The final section is titled Health Care Provider Stories and Final Thoughts. Our first book highlighted patients’ stories of facing cancer and poten- tial infertility while being young. This book provides first person stories from the providers’ side of the equation. In remarkably honest prose we are given insights into the impact oncofertility is having on the health care professionals drawn into thisemergingfield. BothcancerandinfertilityplayprofoundrolesinAmericansocietybeyondtheir existenceasmedicaldiagnoses.Itisourhopethatthisbookwillbeusefulforpeople notonlywithinthehumanitiesandsocialsciencesdisciplinesbutalsoforthosewho areconfrontedwithcancerandthepossibilityofimpairedfertilityandthemedical practitionerswithinoncologyandreproductivemedicinewhoareatthefrontlines ofthisemergingfield. As with any book, there are many people to thank. We are grateful to Shauna Gardino, Jacqueline Kestler, and Bryan Breau for their organizational efforts and constructivecriticism.WealsowishtothankinternDanielBascoforhelpingwith necessary but tedious paperwork and Ehren Fourier for helping with the devel- opment logistics of this book. Finally, this book is an outcome of the summer humanitiesconference,andthisconferencecouldnothavetakenplacewithoutthe help of interns Amanda Fleetwood, Andrew Russell, Kiran Screenivas, and Victor O’Halloran. Chicago,Illinois TeresaK.Woodruff LaurieZoloth LisaCampo-Engelstein SarahRodriguez References 1. American Cancer Society. 2009. Cancer statistics 2009 presentation. http://www.cancer.org/ docroot/PRO/content/PRO_1_1_Cancer_Statistics_2009_Presentation.asp(October12,2009) 2. HornerMJ,RiesLAG,KrapchoM,NeymanN,AminouR,HowladerN,AltekruseSF,Feuer EJ, Huang L, Mariotto A, Miller BA, Lewis DR, Eisner MP, Stinchcomb DG, Edwards Preface vii BK, Eds. SEER cancer statistics review, 1975–2006. Bethesda: National Cancer Institute: (http://seer.cancer.gov/csr/1975_2006/, based on November 2008 SEER data submission, postedtotheSEERwebsite,2009). 3. AmericanCancerSociety.Cancerfactsandfigures2006.Atlanta:AmericanCancerSociety; 2006. 4. ClaymanML,GalvinKM,ArnstonP.Shareddecisionmaking:fertilityandpediatriccancers. In: Woodruff TK, Snyder KA, Eds. Oncofertility: fertility preservation for cancer survivors. NewYork:Springer;2007. 5. Kinahan KE, Didwania A, Nieman CL. Childhood cancer: fertility and psychosocial impli- cations. In: Woodruff TK, Snyder KA, Eds. Oncofertility: fertility preservation for cancer survivors.NewYork:Springer;2007:191(Quote). 6. Synder KA. Oncofertility and the social sciences. In: Woodruff TK, Snyder KA, Eds. Oncofertility: fertility preservation for cancer survivors. New York: Springer; 2007:137 (Quote). 7. Schover LR, Rybicki LA, Martin BA, Bringelsen KA. Having children after cancer: a pilot surveyofsurvivors’attitudesandexperiences.Cancer.1999;86:697–709. 8. Carter J, et al. Gynecologic cancer treatment and the impact of cancer-related infertility. GynecolOncol.2005;97:90–5(Quoteonp.93). 9. GreenD,GalvinH,HorneB.Thepsycho-socialimpactofinfertilityonyoungmalecancer survivors:aqualitativeinvestigation.Psychooncology.2003;12:141–52. 10.WoodruffTK,SynderKA.Oncofertility:FertilityPreservationforCancerSurvivors.Springer, 2007. Contents PartI TheScienceandTechnologyofOncofertility 1 ReproductiveHealthAfterCancer . . . . . . . . . . . . . . . . . 3 ClarisaR.Gracia 2 DesigningFollicle–EnvironmentInteractionswithBiomaterials . 11 RachelM.Smith,TeresaK.Woodruff,andLonnieD.Shea 3 GametePreservation . . . . . . . . . . . . . . . . . . . . . . . . . 25 SusanL.BarrettandTeresaK.Woodruff 4 ToTransplantorNottoTransplant–ThatIstheQuestion . . . . 41 ShermanJ.Silber,TeresaK.Woodruff,andLonnieD.Shea 5 ClinicalCasesinOncofertility . . . . . . . . . . . . . . . . . . . . 55 LaxmiA.Kondapalli,FanzhenHong,andClarisaR.Gracia 6 Cancer Genetics: Risks and Mechanisms of Cancer inWomenwithInheritedSusceptibilitytoEpithelial OvarianCancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69 LeeP.ShulmanandJeffreyS.Dungan 7 ProtectingandExtendingFertilityforFemalesofWild andEndangeredMammals . . . . . . . . . . . . . . . . . . . . . . 87 PierreComizzoli,NucharinSongsasen,andDavidE.Wildt PartII HistoricalandLegalPerspectives 8 PlacingtheHistoryofOncofertility . . . . . . . . . . . . . . . . . 103 SarahRodriguez 9 Medical Hope, Legal Pitfalls: Potential Legal Issues intheEmergingFieldofOncofertility . . . . . . . . . . . . . . . . 111 GregoryDolin,DorothyE.Roberts,LinaM.Rodriguez, andTeresaK.Woodruff ix
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