Rodriguez, Sarah

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DePaul Law Review Volume 61 Issue 3 Spring 2012: Symposium - Changing Conceptions: Exploring the Medical and Legal Advances in Fertility Preservation Article 7 Cancer, Infertility, and the Narrative of Progress Sarah Rodriguez Follow this and additional works at: https://via.library.depaul.edu/law-review Recommended Citation Sarah Rodriguez, Cancer, Infertility, and the Narrative of Progress, 61 DePaul L. Rev. 861 (2012) Available at: https://via.library.depaul.edu/law-review/vol61/iss3/7 This Commentaries is brought to you for free and open access by the College of Law at Via Sapientiae. It has been accepted for inclusion in DePaul Law Review by an authorized editor of Via Sapientiae. For more information, please contact digitalservices@depaul.edu. CANCER, INFERTILITY, AND THENARRATIVE OF PROGRESSSarah Rodriguez*The four essays preceding this one each focused on aspects of theincreasingly diverse and complicated area of reproduction. As theconcluding essay in this Symposium Issue, I will weave these essaysinto my overview of cancer funding in the United States and my cri-tique of the "progress against cancer" narrative.Three of the essays examine fertility preservation for cancer pa-tients to varying degrees, and so I will begin with the seeming outlier:Arshagouni's Be Fruitful and Multiply, by Other Means, if Necessary:The Time Has Come to Recognize and Enforce Gestational SurrogacyAgreements, which is not explicitly about oncofertility. Rather, he ar-gues for federal legalization of gestational surrogacy. A gestationalsurrogate, he states, "provides a noble service that should berespected and honored," and the fact that such an act is not honoredwithout "reservation" is, to Arshagouni, "mystifying."' Arshagounilays out at length the legal and moral arguments others have madeagainst allowing gestational surrogacy and makes his case for whyeach of them comes up short. The compilation of studies he uses toillustrate that some of the fears of those who argue against gestationalsurrogacy-such as the fear that it will be detrimental to the childborn in such a manner-are so far unfounded, and his addressingmany of the legal and ethical concerns contributes to a more robustdebate about this practice. But in his effort to illustrate that this formof reproduction is not the harmful or risky endeavor as argued byothers, he does not address the possibility of harm or risk. Reproduc-tion, in all its old and more recent methods, is based within medical,* I would like to thank Lisa Campo-Engelstein, Teresa Woodruff, and Linda Emanuel forreading this Article in its various stages and Katie Watson for helping me refocus it. I also wantto thank those who commented on this Commentary following a presentation of an earlier ver-sion at an American Society of Bioethics and Humanities conference as well as at a symposiumat the DePaul University College of Law. Research was supported by the Oncofertility Consor-tium grants (NIH 1 UL1 DE019587 and RL1HD058296) from the National Institutes of Health.The content is solely that of the author.1. Paul G. Arshagouni, Be Fruitful and Multiply, by Other Means, if Necessary: The Time HasCome to Recognize and Enforce Gestational Surrogacy Agreements, 61 DEPAUL L. REv. 799, 847(2012).861DEPA UL LAW REVIEWlegal, physiological, social, familial, and economic understandings andrelationships, making it an inherently complicated and complexendeavor.Though gestational motherhood is a possible resource for somewomen who lose both their fertility and their capacity to bear a childas a result of cancer treatment, the remaining three essays all centrallyconcern fertility preservation and cancer treatment. Because ofchanges in cancer treatment, many people within (or before) theirchildbearing years who have cancer will either be cured or have theirlives significantly extended, and many within this population are con-cerned about the impact their cancer treatments may have on theirfuture fertility.2 The preservation of fertility for young people beforethey undergo potentially infertility-inducing cancer treatments is afairly recent development for oncologists to consider.3 Indeed, scien-tists are still investigating many of the emerging options within thefield of oncofertility, in particular the options for women and girls notyet of reproductive age. These include whole ovary and oocyte cry-opreservation as well as the freezing of ovarian tissue. For boys notyet of reproductive age, and thus unable to cryopreserve semen, inves-tigational options include the freezing of testicular tissue.4Health insurance itself is a relatively recent phenomenon, and evenmore recent is the legal mandate that certain procedures be coveredby private health insurance.5 One of these more recent, and far fromuniversal, mandates is coverage of assisted reproductive treatment byhealth insurance companies. In her commentary, Campo-Engelsteinargues for the need for an extension of insurance coverage to includefertility preservation before cancer treatment as part of routine care. 62. Patient's Fact Sheet: Cancer and Fertility Preservation, AM. Soc'Y FOR REPROD. MED. (Jan.2004), http://www.asrm.org/uploadedFiles/ASRM Content/Resources/PatientResources[Fact_Sheets andInfoBooklets/cancer.pdf.3. See generally Jacqueline S. Jeruss & Teresa K. Woodruff, Preservation of Fertility in Patientswith Cancer, 360 NEw ENG. J. MED. 902 (2009); Teresa K. Woodruff, The Emergence ofa NewInterdiscipline: Oncofertility, in ONCOFERTILITY: FERTILITY PRESERVATION FOR CANCER SURVI-VORs 3 (Teresa K. Woodruff & Karrie Ann Snyder eds., 2007).4. Mary E. Fallat & John Hutter, Preservation of Fertility in Pediatric and Adolescent Patientswith Cancer, 121 PEDIATRICS e1461, e1463 (2008); Pasquale Patrizio & Arthur L. Caplan, EthicalIssues Surrounding Fertility Preservation in Cancer Patients, 53 CLINICAL OBSTETRICS & GYNE-COLOGY 717, 718 (2010); see also Jeruss & Woodruff, supra note 3, at 909.5. See generally PAUL STARR, REMEDY AND REACTION: THE PECULIAR AMERICAN STRUG-GLE OVER HEALTH CARE REFORM (2011); see also PAUL OLIVER, CAL. HEALTHCARE FOUND.,STATE EMPLOYER HEALTH INSURANCE MANDATES: A BRIEF HISTORY (2004), available at http://www.masscare.org/wp-content/uploads/2007/05/CHCFEmployerMandatesHistory.pdf.6. Lisa Campo-Engelstein, Commentary, Insurance Coverage for Cancer-Induced Conditions:Comparing Fertility Preservation Technology and Breast Reconstructive Surgery, 61 DEPAUL L.REV. 849 (2012).862 [Vol. 61:861THE NARRATIVE OF PROGRESSTo do so, she compares the loss of fertility as part of cancer treatmentwith the loss of a breast for cancer treatment, asserting that becauseinsurance companies pay for breast replacement surgery after cancertherapy, these companies should envision fertility preservation as partof this routine of care in order to create consistency and fairness incoverage.While Campo-Engelstein argues for fertility preservation as a mat-ter of fairness in insurance coverage for cancer patients, Cholst is con-cerned about the lack of regulation concerning another assistedreproduction option for women who have undergone cancer treat-ment: the use of donor oocytes.7 Cholst, speaking from the perspec-tive of a clinician, is concerned that, while this form of reproduction isviable, it lacks regulation-a concern for both the donor and the re-cipient of the oocyte. She concludes, however, by noting that whilepatients need support to adjust to their cancer diagnosis and progressthrough their treatment, a "focus on technological solutions alone forquality-of-life issues," such as the desire to parent, does not providethe patient with a full perspective.8In her article, Roberts, too, is concerned with the focus on techno-logical solutions. But while both Campo-Engelstein and Cholst touchupon the social context of oncofertility, for Roberts, the underlyingsocial structures of injustice is central to any conversation about theethics of oncofertility. 9 I will return to Roberts at the end of thisCommentary, and I am mindful of the larger social concerns Robertsand others have brought to the fore about fertility preservation, suchas whether it reinforces the primacy of biological parenthood.10But what I want to question in the remainder of this Commentary isthe framing of fertility preservation technologies within the narrativeof progress against cancer. In their recent article, Pasquale Patrizioand Arthur Caplan argue that on an individual patient level, so long asthe standard of informed consent-with particular attention to the pe-diatric patient-is met, there should be no ethical issues in offeringfertility preservation services to cancer patients." But they, as wellmany others who have discussed fertility preservation, including the7. Ina N. Cholst, Oncofertility: Preservation of Reproductive Potential, 61 DEPAUL L. REV.763 (2012).8. Id. at 774-75.9. Dorothy E. Roberts, The Social Context of Oncofertility, 61 DEPAUL L. REV. 777 (2012).10. See Shauna L. Gardino & Linda L. Emanuel, Choosing Life When Facing Death: Under-standing Fertility Preservation Decision-Making for Cancer Patients, in ONCOFERTILITY: ETHI-CAL, LEGAL, SOCIAL, AND MEDICAL PERSPECTIVEs 447, 447 (Teresa K. Woodruff et al. eds..2010).11. See Patrizio & Caplan, supra note 4, at 717-20.2012] 863DEPAUL LAW REVIEWauthor, place the emergence of fertility preservation technologieswithin the "progress against cancer" narrative. 12 Is it really progressto be considering preserving the fertility of a young person diagnosedwith cancer nearly seventy-five years after the creation of the NationalCancer Institute and forty years after the "war on cancer" waslaunched? Should we not primarily ask why a ten-year-old or twenty-five-year-old is even getting cancer-with rates of some commonchildhood cancers increasing-and what we should be doing to pre-vent this diagnosis?13Cancer has a long history, but here I am concerned with the morerecent development of our cultural acceptance of it within a biomedi-cal and individual model: cancer is something we treat, either throughsurgery, chemotherapy, radiation, or some combination rather thansomething we collectively prevent. Beginning with the creation of theNational Cancer Institute in 1937, the foundation of the biomedicalmodel of cancer was established, and, though curtailed with the en-trance of the United States in World War II, it rose again with theinflux of even more funding soon after the war's conclusion.14 Thestrong investment in science by the federal government during the warincited an interest in the expansive possibilities of scientific researchamong Americans.' 5 The push to fund biomedical research grew outof this larger cultural hope that the application of scientific knowledgecould improve and lengthen lives; this belief grew not just from theadvances themselves, but also in the belief in further advances and theunlimited possibilities of science.16 This economic investment, sup-ported by cultural belief, in the potential of scientific and medical re-search profoundly altered Americans' postwar health expectations byreinforcing the conviction that advancing scientific progress would12. See Susan L. Barrett & Teresa K. Woodruff, Gamete Preservation, in ONCOFERTILITY:ETHICAL, LEGAL, SOCIAL, AND MEDICAL PERSPECTIVES, supra note 10, at 25, 31; Patrizio &Caplan, supra note 4, at 718.13. Cf PRESIDENT'S CANCER PANEL, REDUCING ENVIRONMENTAL RISK, 2008-2009 ANNUALREPORT 111 (2010), available at http://deainfo.nci.nih.gov/advisory/pcp/annualReports/pcp08-09rpt/PCP_- Report_08-09_508.pdf ("It is vitally important to recognize that children are far moresusceptible to damage from environmental carcinogens and endocrine-disrupting compoundsthan adults.").14. See SIDDHARTHA MUKHERJEE, THE EMPEROR OF ALL MALADIES: A BIOGRAPHY OFCANCER 26 (2010); JAMES T. PATTERSON, THE DREAD DISEASE: CANCER AND MODERN AMERI-CAN CULTURE 137 (1987); David Cantor, Introduction to Cancer Control and Prevention in theTwentieth Century, in CANCER IN THE TWENTIETH CENTURY 5-6 (David Cantor ed., 2008).15. See GERALD N. GROB, THE DEADLY TRUTH: A HISTORY OF DISEASE IN AMERICA 256(2002).16. See Judith P. Swazey & Rende C. Fox, Remembering the "Golden Years" of Patient-Oriented Clinical Research: A Collective Conversation, 47 PERSP. BIOLOGY & MED. 487, 487-88(2004).864 [Vol. 61:861THE NARRATIVE OF PROGRESSeasily translate into medical progress, thus preserving and lengtheninglives. Scientific developments created an impression of inevitable pro-gress, with illness and disability no longer viewed as inevitable parts oflife, but rather as problems to be overcome by scientific and medicaladvances. Americans' belief in the unlimited potential of science andits resultant medical advances was further influenced by dramaticchanges in the social and economic situation for many Americans, inparticular a rise in the standard of living. The combination of a higherstandard of living and a belief in science (as well as its clinical applica-tions supporting a longer life) resulted in Americans spending moreon health care and a rise in the expectations of that care.17Private organizations such as the American Cancer Society and, in-creasingly in more recent decades, the pharmaceutical industry alsocame to play a significant role in funding, thus establishing and rein-forcing the biomedical model of cancer. Here, I simply note the in-creased funding allocated by the federal government to this model asa force behind the model." The U.S. government greatly intensifiedthe funding of biomedical cancer research as part of the beginnings ofa national medical research policy.19 Following World War II, the fed-eral government dramatically amplified spending on cancer research:in 1947, $14 million went to fund cancer research, and this grew to$110 million in 1961, increasing to more than $200 million in 1970.20In 1971, Congress and President Richard Nixon declared a "war oncancer," resulting in the federal government doubling the amount ofbiomedical research funding directed at the disease within one year.Indeed, this war saw a vast amount of money directed to the biomedi-cal research of cancer: in 1973, $500 million was allocated to the can-cer research, then $600 million in 1974, with another $1.5 billion to bespent over the next three years. 21 More recently, from 2005 through2010, the budget for the National Cancer Institute has averaged $4.9billion annually. 22I am not questioning the spending of this money on biomedical re-search, the resulting clinical advancements of which can be seen in thecontrol of many manifestations of cancer, including testicular cancerand leukemia. I am not opposed to the biomedical model of cancer17. See GROB, supra note 15, at 245; MUKHERJEE, supra note 14, at 121.18. See R. F. Bud, Strategy in American Cancer Research After World War II: A Case Study, 8Soc. STUD. Sci. 425, 431 (1978).19. See GROB, supra note 15, at 256; MUKHERJEE, supra note 14, at 121.20. PATTERSON, supra note 14, at 171-72, 245.21. MUKHERJEE, supra note 14, at 188.22. Cancer Research Funding, NAT'L CANCER INST. (June 2, 2011), http://www.cancer.gov/can-certopics/factsheet/NCI/Fsl .pdf.2012] 865DEPAUL LAW REVIEWthat focuses on the individual. But this model developed, and is todayreinforced, largely at the expense of collective cancer prevention.And this is what 1, following others before me, am questioning. This isnot to say that cancer prevention has been absent. Indeed, preventionagainst cancer, with an emphasis on individual responsibility, has re-mained a popular goal, though an elusive one, since the beginning ofthe biomedical model of cancer. 23 In recent decades, increased atten-tion has been devoted to examining behavioral factors as well as togenetic susceptibility to cancer. 24 With respect to some cancers thisemphasis on personal behavior has worked, most notably the tie be-tween smoking and lung cancer, just as it has in the case of earlyscreening (such as with cervical cancer) or with determining geneticfactors (such as with certain forms of breast cancer).But despite a growing emphasis on genetic risk and lifestyle factors,the dominant model remains the biomedical approach to a diagnoseddisease. Activists, especially within the last two decades and in partic-ular environmental breast cancer activists, have begun questioning thedominant biomedical model of addressing the disease after it developsand instead argue for more attention paid to possible environmentalfactors as a means to prevent the occurrence of cancer.25 Cliniciansand scientists have also recently expressed concern about the effectsof environmental factors; a recent President's Cancer Panel reportwas centrally concerned that the "true burden of environmentally in-duced cancer has been grossly underestimated." 2 6 Attention to thepossible environmental factors places the responsibility for dealingwith cancer not on individuals, but on the institutions responsible forexposure to carcinogens in our homes, workplaces, and communities,thus changing this model to include social structures as well as medicalones. And it refocuses the model of cancer from attention to the dis-ease once it has occurred to prevention of it from occurring.Perhaps the increased awareness of the possibility of infertility forchildren and young adults as a result of cancer treatments will initiatea discussion about the limits of this biomedical model of cancer. Per-haps the emergence of fertility preservation for children and youngadult cancer patients will initiate a discussion about why young peopleare still getting cancer and thus increase the calls for research on the23. GROB, supra note 15, at 260.24. BARBARA L. LEY, FROM PINK TO GREEN: DISEASE PREVENTION AND THE ENVIRONMEN-TAL BREAST CANCER MOVEMENT 5 (2009).25. LEY, supra note 24, at 30-31.26. Letter from LaSalle D. Leffall, Jr., Chair, President's Cancer Panel, to President Obama,in PRESIDENT'S CANCER PANEL, supra note 13.866 [Vol. 61:861THE NARRATIVE OF PROGRESSprevention of cancer, and perhaps that discussion will take into ac-count the social structure factors over which individuals have littlecontrol. This, at any rate, is my hope.But I worry that such optimism could be misplaced by our culturallove affair with technological interventions to endemic problems, bothmedical and otherwise. Instead of addressing the root of the problem,we may continue along with the biomedical model and search for a"cure" for cancer, accepting this as the definition of progress. I fear,then, that fertility preservation technologies for cancer patients couldbecome one more example of the classically American solution tomedical and social problems: a technological fix to provide a solutionat the end, rather than acting to prevent a problem from the begin-ning. As Roberts so compellingly and forcefully argues both in thisIssue and elsewhere, technological solutions to social problems oftenresults in further oppressing already-disadvantaged groups.27 Discuss-ing this reliance on high-tech, end-point solutions rather than on pre-vention is where, perhaps, the conversation regarding fertilitypreservation should occur.27. See DOROTHY ROBERTS, KILLING THE BLACK BODY: RACE, REPRODUCTION, AND THEMEANING OF LIBERTY 269 (1997).2012] 867DEPAUL LAW REVIEW [Vol. 61:861868

Cancer, Infertility, and the Narrative of Progress

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Cancer, Infertility, and the Narrative of Progress

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