Ethical Issues in Lab and Diagnostic Testing Essay Paper

Keywords fertility preservation, paediatrics, oncology

ABSTRACT Given advances in the science of fertility preservation and the link between fertility choices and wellbeing, it is time to reframe our ethical thinking around fertility preservation procedures for children and young people with cancer. The current framing of fertility preservation as a possible offer may no longer be universally appropriate. There is an increasingly pressing need to discuss the ethics of failing to preserve fertility, particularly for patient groups for whom established techniques exist. I argue that the starting point for deliberating about a particular patient should be a rebut- table presumption that fertility preservation ought to be attempted. Consid- eration of the harms applicable to that specific patient may then override this presumption. I outline the benefits of attempting fertility preservation; these justify a presumption in favour of the treatment. I then discuss the potential harms associated with fertility preservation procedures, which may justify failing to attempt fertility preservation in an individual patient’s particular case. Moving from a framework of offer to one of rebuttable presumption in favour of fertility preservation would have significant impli- cations for medical practice, healthcare organizations and the state. Ethical Issues in Lab and Diagnostic Testing Essay Paper

As long-term survival rates for paediatric cancers improve, oncologists are increasingly focusing on patients’ future quality of life beyond their immediate treatment.1 One element of this broadened focus has been patient fertility. Cancer treatments can have negative effects on patient fertility, varying in degree depending on the nature of the treatment. The risk of infertility approaches 100% for some treatments,2 however the overall risk is much lower. The British Fertility Society writes that:

[s]ome 15% [of children treated for cancer] will have a high risk (95%) of early and irreversible gonadal

failure, whereas others may have lesser extents of com- promised reproductive capacity.3

A range of fertility preservation strategies have been developed that are applicable to this group of children and young people. These strategies are outlined in Table 1. Some of these strategies are experimental and some are established techniques. All the strategies avail- able for prepubertal patients are currently experimental. My argument in this article applies primarily to the older paediatric groups for whom established techniques exist, and assumes that the patient is undergoing cancer treat- ment with the intent of cure. Ethical Issues in Lab and Diagnostic Testing Essay Paper

Given the rapid progress in the science of fertility pres- ervation and the links between fertility choices and well- being, it is time to reframe the ethical question posed in relation to this issue. I argue that the fundamental ques- tion is no longer ‘is offering fertility preservation ethically justifiable?’ but rather ‘is failing to proceed with fertility

1 S.K. McQuillan et al. Audit of Current Fertility Preservation Strate- gies Used by Individual Pediatric Oncologists Throughout Australia and New Zealand. J Pediatr Oncol 2013; 1: 112–118; C. Stern et al. Reproductive Concerns of Children and Adolescents with Cancer: Challenges and Potential Solutions. Clinical Oncology in Adolescents and Young Adults 2013; 3: 63–78; W.H.B. Wallace & A.B. Thomson. Preservation of Fertility in Children Treated for Cancer. Arch Dis Child 2003; 88: 493–496. 2 McQuillan et al., op. cit. note 1.

3 British Fertility Society. A Strategy for Fertility Services for Survivors of Childhood Cancer. Hum Fertil 2003; 6: A1–A40: A4.

Address for correspondence: Dr Rosalind McDougall, Level 4, 207 Bouverie St, University of Melbourne VIC 3010, Australia. Email: rmcdo @unimelb.edu.au Conflict of interest statement: No conflicts declared

Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/bioe.12190 Volume 29 Number 9 2015 pp 639–645

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preservation ethically justifiable?’. I outline the benefits and potential harms to the child or young person that are associated with fertility preservation. The benefits justify a starting point of presuming that fertility preservation procedures ought to occur, at least in the older patient groups where established techniques exist. The harms applicable to a particular child’s situation may then justify overriding that presumption on an individual basis. I claim that, if we are to take seriously the idea that fertility choice is important to wellbeing, then health pro- fessionals, hospitals and the state have a range of ethical obligations to create an environment in which fertility preservation is a presumed element of treatment for a significant subset of paediatric cancer patients. Ethical Issues in Lab and Diagnostic Testing Essay Paper

ASKING A DIFFERENT ETHICAL QUESTION

Clinical guidelines direct doctors to discuss fertility pres- ervation with cancer patients and/or parents, within a context of free choice. Fertility preservation is framed as a possible option to be offered. For example, the Ethics Committee of the American Society for Reproductive Medicine (ASRM) writes that:

[p]hysicians should inform cancer patients about options for fertility preservation and future reproduc- tion prior to treatment . . . Parents may act to preserve fertility of cancer patients who are minors if the child assents and the intervention is likely to provide net benefits to the child4 [italics added].

The American Society of Clinical Oncology uses some- what stronger language, directing doctors to ‘suggest’ and to ‘use’ established methods of fertility preservation for postpubertal paediatric patients.5 The British Fertility Society frames its guidelines in terms of ‘offering’ fertility preservation.6 They recommend that oncology units ensure that ‘the parents of non-competent children are given the opportunity of discussing the issues relating to their children’s gonadal tissue conservation and agreeing an appropriate course of action.’7

Ethical discussions echo this framework of offer, pos- iting fertility preservation as a parental choice. For example, Dudzinski explicitly frames fertility preserva- tion procedures as an ‘offer’, emphasizing that ‘[p]atients should also be informed of the risks and benefits of alter- natives, including adoption, remaining childless, surro- gacy or the possibility of conceiving naturally without any medical assistance’.8 Grundy and colleagues similarly argue that ‘the option of no [fertility] treatment’ ought to be disclosed by doctors.9 Ethics discussions of paediatric fertility preservation have tended to focus on the question of whether it is appropriate to do fertility preservation procedures for a particular patient. Cohen, for example, argues that parents, patients and doctors ‘need to take many considerations into account as they decide whether to proceed with fertility-preserving treatments’10 [italics added]. In the context of a very young patient, Quinn and colleagues consider ‘[whether] pursuing ovarian tissue cryopreservation was ethically justified’11 [italics added]. The ethical discussion to date has primarily conceptual- ized fertility preservation as an offer. The key question posed is whether offering and undertaking fertility pres- ervation procedures for a particular patient is ethically justified. Ethical Issues in Lab and Diagnostic Testing Essay Paper

This framing of the issue is perhaps explained by the fact that, until quite recently, most paediatric fertility preservation procedures have been experimental and thus considered in the context of research ethics. Cohen, for example, writes that ‘major medical/biological issues must be resolved before many of these methods can be considered accepted medical treatments’ and that

4 Ethics Committee of the American Society for Reproductive Medi- cine. Fertility Preservation and Reproduction in Cancer Patients. Fertil Steril 2005; 83: 1622–1628: 1622.

5 A.W. Loren et al. Fertility Preservation for Patients with Cancer: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 2013; 31: 2500–2510: 2504, 2501. 6 British Fertility Society, op. cit. note 3, pp. A6–A7. 7 Ibid: A9. 8 D.M. Dudzinski. Ethical Issues in Fertility Preservation for Adoles-

cent Cancer Survivors: Oocyte and Ovarian Tissue Cryopreservation. J Pediatr Adolesc Gynecol 2004; 17: 97–102: 101. 9 R. Grundy et al. Fertility Preservation for Children Treated for

Cancer (2): Ethics of Consent for Gamete Storage and Experimenta- tion. Arch Dis Child 2001; 84: 360–362: 360. 10 C.B. Cohen. Ethical Issues Regarding Fertility Preservation in Ado- lescents and Children. Pediatr Blood Cancer 2009; 53: 249–253: 251 11 G.P. Quinn et al. Preserving the Right to Future Children: An Ethical Case Analysis. Am J Bioeth 2012; 12: 38–43: 38.

Table 1. Fertility preservation strategies for paediatric cancer patients (adapted from Royal Children’s Hospital 2014; see also Loren et al. 2013)

Prepubertal Pubertal/Post-pubertal

Males Freezing testicular tissue (experimental)

Freezing ejaculated sperm (established)

Freezing surgically- extracted sperm (established)

Freezing testicular tissue (experimental)

Females Freezing ovarian tissue (experimental)

Surgery to move ovaries outside the field of radiation (experimental)

Freezing ova (established) Freezing ovarian tissue

(experimental) Surgery to move ovaries

outside the field of radiation (experimental)

Hormone injections to switch off ovaries during treatment (experimental)

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‘ethical considerations . . . including . . . the provision of experimental treatment to children must be taken into account’.12 The British Fertility Society similarly states that ‘[a]s these techniques are at a preliminary stage of development we consider that they should be governed by the principles applicable to research unless or until there is proven therapeutic benefit.’13 When contextualized as research, considering the ethics of proceeding with fertil- ity preservation is entirely appropriate as is an emphasis on parental choice. Ethical Issues in Lab and Diagnostic Testing Essay Paper

However, it is questionable whether this framing con- tinues to be ethically optimal. Science has evolved rapidly in this area, particularly over the last decade. Some fer- tility preservation options have progressed from experi- mental status to established techniques in that time, while promising new experimental possibilities have emerged.14

Many live births have now been achieved using harvested gametes; sperm banking is considered highly successful and embryo and ova freezing have reported success rates of approximately 20% per transfer.15 There are also case reports of live births from frozen ovarian tissue harvested from adults.16 At the time of writing no pregnancies or live births have been reported for tissue harvested from prepubertal patients, but recent studies indicate promise in this area of research.17 Authors write positively about experimental treatments, referring to ‘forthcoming options’,18 ‘fertility preservation strategies of the future’19

and the ‘promise of revolutionizing future fertility prospects’.20

Alongside these scientific advances, there is also increasing empirical evidence both about the negative effects of infertility on wellbeing and about cancer survi- vors’ views and experiences. It is perhaps unsurprising that infertility is associated with decreased wellbeing, given the significance attributed to biological parenthood in many cultures. The likelihood of psychological distress amongst infertile people (both women and men) has been well documented.21 In cancer survivors specifically,

treatment-related infertility has been shown to influence quality of life. For example, one recent study of 240 women reports that:

[e]ven at long-term follow-up, distress about inter- rupted childbearing persists, particularly in childless women. Social parenthood [ie. parenting adopted chil- dren or stepchildren] buffers distress somewhat, but not completely.22

Similarly, a qualitative study of 38 young adults diag- nosed with cancer as teenagers reports that, for some participants, ‘fertility was linked to their sense of identity and their lack of control over it was a source of distress or frustration’.23 Studies with young adult survivors of cancer (primarily diagnosed in early adulthood) indicate that ‘biological parenthood was still an important goal for most survivors’.24

The empirical evidence about the negative impact of infertility is reflected in the philosophical literature linking reproductive choice and wellbeing. Theories of human rights point to the importance of reproductive health and choice. For example, Nussbaum’s capability theory of social justice invokes the notion of reproductive health as important to wellbeing. In her list of ten capa- bilities that describe the goods to which citizens are politi- cally entitled, reproduction is mentioned twice. Central capability two – ‘bodily health’ – includes ‘being able to have good health, including reproductive health’.25

Central capability three – ‘bodily integrity’ – includes ‘having opportunities for choice in matters of reproduc- tion’.26 This emphasis on reproductive choice as part of human wellbeing is echoed in documents such as the UN Declaration of Human Rights. Article 16 provides further support for the centrality of reproductive choice to wellbeing, describing a human right ‘to marry and to found a family’.27

12 Cohen, op. cit. note 10, p. 249. 13 British Fertility Society, op. cit. note 3, p. A5. 14 Loren et al., op. cit. note 5. 15 Fertile Hope. 2008. Cancer & Fertility: Fast Facts for Reproductive Professionals. Available at http://www.fertilehope.org/uploads/pdf/ FH_RP_FastFacts_08.pdf [cited 2014 August 1]: 8, 14. 16 Ibid: 14. 17 See for example, V. Luyckx et al. Evaluation of Cryopreserved Ovarian Tissue from Prepubertal Patients After Long-term Xenografting and Exogenous Stimulation. Fertil Steril 2013; 100: 1350– 1357. 18 Loren et al., op. cit. note 5, p. 2502. 19 A.A. Pacey. Fertility Issues in Survivors from Adolescent Cancers. Cancer Treat Rev 2007; 33: 646–655: 650. 20 British Fertility Society, op. cit. note 3, p. A3. 21 See for example, C.W. Bak et al. Hormonal Imbalances and Psycho- logical Scars Left Behind in Infertile Men. J Androl 2012; 33: 181–189; S. Gardino, S. Rodriguez, L. Campo-Engelstein. Infertility, Cancer, and Changing Gender Norms. J Cancer Surviv 2011; 5: 152–157; R. Ethical Issues in Lab and Diagnostic Testing Essay Paper

Klemetti et al. Infertility, Mental Disorders and Well-being – A Nation- wide Survey. Acta Obstet Gynecol Scand 2010; 89: 677–682; S.H. Malik & N. Coulson. The Male Experience of Infertility: A Thematic Analysis of an Online Infertility Support Group Bulletin Board. J Reprod Infant Psychol 2008; 26: 18–30. 22 A.L. Canada & L.R. Schover. The Psychosocial Impact of Inter- rupted Childbearing in Long-Term Female Cancer Survivors. Psychooncology 2012; 21: 134–143: 134. 23 M.A. Crawshaw & P. Sloper. ‘Swimming Against the Tide’ – The Influence of Fertility Matters on the Transition to Adulthood or Survivorship Following Adolescent Cancer. Eur J Cancer Care 2010; 19: 610–620: 614. 24 L.R. Schover. Motivation for Parenthood After Cancer: A Review. NCI Monogr 2005; 34: 2–5: 3. 25 M.C. Nussbaum. Creating Capabilities: The Human Development Approach. Cambridge, MA: Belknap Press of Harvard University Press; 2011. 33. 26 Ibid. 27 United Nations. The Universal Declaration of Human Rights. 1948. Available at http://www.un.org/en/documents/udhr/ [cited 2014 Febru- ary 7].

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Given this context of advances in the science of fertility preservation and the link between fertility choices and wellbeing, I suggest that it is time to reframe our ethical thinking around fertility preservation procedures for chil- dren and young people with cancer. There is an increas- ingly pressing need to discuss the ethics of failing to preserve fertility. The current framing of fertility preser- vation as an option to be offered may no longer be ethi- cally appropriate. As reproductive science advances, the fundamental question evolves from ‘is offering or pro- ceeding with fertility preservation ethically justified?’ to ‘is failing to proceed with fertility preservation ethically justified?’. Given the strength of the reasons to proceed with fertility preservation, primarily in the older paediat- ric groups where established techniques exist, I suggest that the ethically appropriate starting point for deliber- ating about any particular child is a rebuttable presump- tion that fertility preservation should be attempted. Consideration of the harms applicable to that specific patient may then override this presumption.

BENEFITS TO THE CHILD OF ATTEMPTING FERTILITY PRESERVATION PROCEDURES

Such a starting point is significantly different from the current context of offering fertility preservation as a pos- sible option for families to consider. There are two main benefits of fertility preservation procedures that justify this presumption in favour of the procedure. Ethical Issues in Lab and Diagnostic Testing Essay Paper

Preventing or minimizing decrease in future fertility

As outlined in the previous section, both empirical and philosophical research suggests that preventing an avoid- able decrease in a child’s future fertility and hence oppor- tunity for future reproductive choice benefits that child. Of course, undergoing a fertility preservation procedure is no guarantee that the patient will later become a parent to a baby who is genetically related to him or her. As Lucke has argued, ‘a woman’s reproductive autonomy . . . is highly contingent on multiple events beyond a woman’s control’.28 Versions of many of the social, biological and environmental constraints that Lucke highlights similarly apply to men. However, failure to undertake fertility preservation procedures decreases the patient’s control over his or her reproductive choices in a way that could have been avoided. Unlike many of the

factors that Lucke cites (such as meeting a partner, being sufficiently economically independent, etc.), failure to undertake fertility preservation procedures deprives the child of a degree of choice that he or she otherwise would have had. This is clearly the case for older children and young people where established procedures for fertility preservation exist, but less so for prepubertal children where only experimental procedures are available. (The benefit for prepubertal children remains speculative at this stage. Thus there is a strong argument that the deci- sion about fertility preservation remains essentially at the parents’ discretion for this age group, so long as only experimental techniques are available.)29

Demonstrating concern for the child’s future fertility

No fertility preservation procedure guarantees that the child will be able, as an adult, to parent a child who is genetically related to him or her. A fertility preservation procedure may be ‘successful’ at the time of the child’s illness, in the sense of collecting and freezing viable sperm or ova or functional gonadal tissue. However, this may not proceed to ‘success’ further down the track: there may yet be no resultant pregnancy or birth of a child who is genetically related to the cancer survivor. Nonetheless it could still be argued that, even when fertility preserva- tion procedures are not successful in the latter sense (or even in either sense), a benefit to the child still exists. The attempt to preserve the child’s fertility has demonstrated the parents’ and clinicians’ concern for the child’s future reproductive choices. The survivor in adulthood may potentially be comforted by knowing that the people caring for them tried to preserve his or her chance of genetic parenthood. Ethical Issues in Lab and Diagnostic Testing Essay Paper

POTENTIAL HARMS TO THE CHILD OF FERTILITY PRESERVATION PROCEDURES

These significant benefits justify a presumption in favour of attempting fertility preservation, assuming that there are effective techniques available. However, this pre- sumption is a rebuttable one; where the fertility preser- vation procedure involves harms to the child, such harms may justify overriding the presumption.

The harms associated with fertility preservation fall into two categories: harms that can be avoided

28 J.C. Lucke. Reproductive Autonomy is an Illusion. Am J Bioeth 2012; 12: 44–45: 45.

29 L. Gillam. Editorial: Children’s Bioethics and the Zone of Parental Discretion. Monash Bioeth Rev 2010; 29: 09.1–09.3; H. Gold, G. Hall & L. Gillam. Role and Function of a Paediatric Clinical Ethics Service: Experiences at the Royal Children’s Hospital, Melbourne. J Paediatr Child Health 2011; 47: 632–636.

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through appropriate institutional processes and harms that are intrinsic to the procedure for that individual child’s situation. Some delays to cancer treatment are of the first type, resulting from ameliorable organizational structures and processes. Concerns about false hope are also of the first type; such concerns can be addressed with a robust multiple stage informed consent process involving informed consent for harvest and storage and then a later informed consent process for use of the tissue to ensure that patients and families remain realistic.30 I will focus on the harms that are intrinsic to fertility preservation procedures. These present the strongest reasons to rebut the presumption in favour of proceeding with fertility preservation in a specific patient’s case.

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Delaying cancer treatment for female adolescents

For the best possible results, fertility preservation needs to occur before the cancer treatment commences. There- fore, in some cases, undergoing fertility preservation procedures can result in the child’s cancer treatment beginning later than it otherwise would have. For some types of fertility preservation procedures (particularly ova harvest and freezing), a time delay of several weeks is a necessary part of the process. Delay to cancer treatment has been identified as a barrier to fertility preservation for female adolescent patients and their parents. Burns and colleagues found that both of these groups ‘are interested in options to help preserve fertility . . . but they are not willing to postpone treatment for this purpose’.31 Ethical Issues in Lab and Diagnostic Testing Essay Paper

Precipitating further illness for some cancer types

For certain types of cancer, the surgery involved in some fertility preservation procedures risks the cancer spread- ing. Further, if the cancer is of a type that involves a risk of ovarian metastases, reimplanting harvested tissue would risk a recurrence of the cancer. These two harms are each potentially very significant, decreasing the patient’s chance of survival; in the short-term when the surgery itself risks spreading the cancer or in the longer term when reimplanting harvested tissue risks recurrence. Clearly, failing to attempt to preserve fertility is justified when the process of fertility preservation itself increases the chances that the cancer will spread or recur.

Risks of procedures

There are small but real risks associated with fertility preservation procedures, varying dependent on the type of procedure. Surgical techniques for fertility preserva- tion involve potential harms to the child. Anaesthesia is necessary for the removal of gonadal tissue, the harvest- ing of ova, the surgical extraction of sperm in children or moving the ovaries.32 A general anaesthetic carries various low risks of side effects or adverse reactions. There is also a risk of infection associated with any surgery. Non-surgical techniques also involve potential harms to the child. Hormonal suppression of the ovaries precipitates menopausal symptoms. Freezing ejaculated sperm requires the patient to masturbate which may involve embarrassment for the young man. Thus the majority of fertility preservation procedures themselves involve some possible harm or harms to the child or young person of varying degrees. In general, these harms can be minimized such that they would not justify overriding the presumption in favour of fertility preser- vation. For example, a surgical procedure requiring general anaesthetic could be performed when the patient is already having a general anaesthetic for an element of their cancer treatment (as is currently common practice). However, depending on the patient’s specific clinical situ- ation, these harms may be sufficient to justify failing to preserve fertility. Ethical Issues in Lab and Diagnostic Testing Essay Paper

RISKS TO THE TRIADIC DOCTOR-PARENT-CHILD RELATIONSHIP

On the framework that I am proposing of a rebuttable presumption in favour of fertility preservation, an impor- tant question arises: what if the child or young person refuses? Children and young people have the right to be involved in decision-making in a way that reflects their emerging autonomy. Several studies indicate that young men offered the opportunity to bank sperm often decline.33 Current views in the fertility preservation litera- ture indicate that the agreement of the patient is neces- sary for fertility preservation to be ethically appropriate. Cohen, for example, argues that ‘if a minor who is deemed capable of assenting objects to a proposed treat- ment and does not assent, that treatment should not be

30 Grundy et al., op. cit. note 9; Wallace & Thomson, op. cit. note 1. 31 K.C. Burns, C. Boudreau & J.A. Panepinto. Attitudes Regarding Fertility Preservation in Female Adolescent Cancer Patients. J Pediatr Hematol Oncol 2006; 28: 350–354: 350.

32 Royal Children’s Hospital. Fertility preservation kit: for health pro- fessionals to use when helping newly diagnosed patients and families make choices about fertility preservation. Melbourne: Royal Children’s Hospital; 2014. Copy on file with author. 33 A.L. Chong et al. A Cross Canada Survey of Sperm Banking Prac- tices in Pediatric Oncology Centres. Pediatr Blood Cancer 2010; 55: 1356–1361; J.L. Klosky et al. Sperm Cryopreservation Practices Among Adolescent Cancer Patients at Risk for Infertility. Pediatr Hematol Oncol 2009; 26: 252–260.

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given’.34 The American Society for Reproductive Medi- cine similarly states that fertility preservation procedures must fulfil the ‘requirements of minor assent, parental consent and net benefit’.35

However, it is important that this emphasis on patient assent be seen in the context of a decision-making process rather than a single conversation or event. Decision- making around fertility preservation may well entail a series of discussions with the patient and his or her family. Shnorhavorian and colleagues put forward a compelling argument that a patient’s ‘no’ to fertility pres- ervation should be the beginning rather than the end of the conversation.36 They suggest that ‘practitioners should probe into patients’ initial reluctance to bank sperm’ and that ‘[a]dolescents’ long-term interest in keeping options available for future parenting decisions can justify a more prescriptive approach’.37 An explora- tion of the patient’s reasons for refusal may open up possibilities for pursuing fertility preservation in a way that is acceptable to the child or young person. Doctors are justified in attempting to persuade the patient in a way that is respectful of the young person’s developing autonomy. However, in some cases the patient’s refusal may be steadfast. In such cases, the child or young per- son’s refusal introduces an additional harm into the analysis: the distress caused by having their views disre- garded or their body subjected to an intrusion which they do not want. In some cases where this distress is substan- tial, this harm may justify failing to preserve fertility.

A further important question to consider is ‘what if the parents refuse?’. The argument presented so far would suggest that, when faced with parents refusing fertility preservation for their pubertal or postpubertal child, health professionals would be justified in attempting to persuade the parents to consent to the procedure. However, in such cases, again there are additional harms to the child that need to be considered. Attempting to persuade some parents might compromise the relation- ship between the treating team and the family, with potential negative effects on the patient’s healthcare. Any decrease in engagement or respect in the therapeutic alli- ance between the doctors and the family could be very harmful to the patient. In some cases, the extent of this harm may justify failing to attempt to preserve the patient’s fertility. This may be the case for specific families where particular harms would be precipitated by proceeding. Ethical Issues in Lab and Diagnostic Testing Essay Paper

FROM A PARADIGM OF OFFER TO A PARADIGM OF REBUTTABLE PRESUMPTION

I have argued that, given the links between fertility choices and wellbeing, we should reconceptualize the ethics of fertility preservation from the current paradigm of offer to a paradigm of rebuttable presumption in favour of undertaking fertility preservation procedures. However, such a move would require a number of sub- stantial structural changes.

A paradigm of rebuttable presumption is very different from current practice in many paediatric cancer services. While there is, of course, enormous variation between different centres, the limited data available suggests that many health professionals are uncomfortable with dis- cussing fertility preservation procedures and that chil- dren and young people are missing out on this element of treatment. Far from a paradigm shift from offer to rebut- table presumption, it seems that many patients are not currently receiving even an offer. A 2007 US study of 115 paediatric oncology nurses indicated that sperm conser- vation was discussed with patients in approximately half of the centres represented, and that ova conservation was discussed with patients in approximately one fifth.38 A 2008 study of paediatric oncologists in the UK found that the effect of cancer treatment on fertility was discussed with 63% of patients, 61% of whom were judged to be at high or medium risk of fertility problems.39 McQuillan and colleagues suggest various elements that would facili- tate oncologists’ increased comfort with fertility preser- vation procedures: more longterm data, multidisciplinary treatment teams, and better access to information.40

Interestingly, the recent survey by McQuillan and col- leagues of Australian and New Zealand paediatric oncologists both confirms the lack of universal discussion of fertility issues and provides insight into the role that individual health professionals can play in determining whether or not fertility preservation procedures are undertaken for a particular patient. They report that:

[t]he reported FP [fertility preservation] uptake in patient population of oncologists surveyed was 25%. However, there was a bimodal distribution with some respondents quoting a 100% uptake on gamete/ gonadal retrieval and storage.41 Ethical Issues in Lab and Diagnostic Testing Essay Paper

This suggests that the approach of individual doctors to this discussion can have a strong impact. It would be

34 Cohen, op. cit. note 10, p. 251. See also J.A. Robertson. Cancer and Fertility: Ethical and Legal Challenges. NCI Monogr 2005; 34: 104–106. 35 Ethics Committee of the ASRM, op. cit. note 4: 1625. 36 M. Shnorhavorian et al. Responding to Adolescents with Cancer Who Refuse Sperm Banking: When ‘No’ Should Not Be the Last Word. J Adolesc Young Adult Oncol 2011; 1: 114–117. 37 Ibid: 114.

38 S.T. Vadaparampil et al. Institutional Availability of Fertility Pres- ervation. Clin Pediatr 2008; 47: 302–305. 39 R.A. Anderson et al. Do Doctors Discuss Fertility Issues Before They Treat Young Patients With Cancer? Hum Reprod 2008; 23: 2246– 2251. 40 McQuillan et al., op. cit. note 1. 41 Ibid: 116.

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useful to know more about the practice of doctors whose patients are more likely to proceed with fertility preser- vation. On the basis of their qualitative research with adult survivors of childhood cancer and their parents, Nieman and colleagues argue that ‘physicians . . . greatly influence what patient and parents know and consider important over the course of the disease’.42 These researchers also report that ‘parents believed that for maximum acceptance, fertility preservation should be presented to parents as part of their child’s treatment “package” when discussing cancer treatment options’.43

To enact a shift to a paradigm of rebuttable presumption for some types of patients would be a significant change from the current practice of many doctors, but one that seems necessary if we are to take seriously the idea that future fertility is an important element of children’s and young people’s wellbeing.

Alongside doctors’ ethical obligations, there are also responsibilities on the part of the hospital and the state in relation to this issue. The hospital has a responsibility to create an environment that is conducive to preserving children and young people’s fertility. A key aspect of this is the allocation of sufficient resources to ensure that the procedures can be performed in a timely manner. It is the hospital’s responsibility to ensure that patients can access fertility preservation procedures with minimum delay to their cancer treatment. The hospital ought also to ensure that the cancer service is structured in such a way that doctors are supported to proceed with fertility preserva- tion for their patients. Drawing on the evidence about environmental factors (such as multidisciplinary teams and access to educational materials) that facilitate doctors’ work in this area, hospitals ought to support their staff to make fertility preservation possible for their patients. The state similarly has ethical obligations in relation to fertility preservation for children and young

people with cancer. In order to ensure that the wellbeing of children and young people is protected in this way regardless of the patient’s socioeconomic status, the state ought to fund the costs involved in both the procedures themselves and the storage of the gametes or tissue. Ethical Issues in Lab and Diagnostic Testing Essay Paper

CONCLUSION

I have argued that it is time for a shift in our ethical thinking around fertility preservation for paediatric cancer patents. The current paradigm of offer is no longer universally appropriate, given the evidence for substan- tial links between fertility choices and wellbeing and the advancing state of science in this area. The benefits of attempting fertility preservation justify a presumption in favour of the procedures, at least for the older paediatric groups for whom effective techniques are available. This presumption may then be rebutted in some cases when potential harms to the specific child are considered. Adopting this kind of process for reasoning about fertil- ity preservation for a particular patient represents a sig- nificant shift from current practice. Further research on doctors’, patients’ and families’ experiences of fertility preservation would enable a deeper and more detailed understanding of the harms and benefits involved, and facilitate ethical practice in this important area. Ethical Issues in Lab and Diagnostic Testing Essay Paper

Acknowledgments

I am grateful to Clare Delany, Lynn Gillam and audiences at the Inter- national Association for Bioethics conference in Mexico City 2014 and the National Paediatric Bioethics Conference in Melbourne 2014 for their helpful feedback on an earlier draft of this paper. I am also indebted to Lauren Notini for research assistance and to Harene Ranjithakumaran for help with additional references. This work was funded by an Australian Research Council Discovery Early Career Researcher Award (DE120100488).

Rosalind McDougall is a Research Fellow in Ethics at the Centre for Health Equity (Melbourne School of Population and Global Health, University of Melbourne) and the Children’s Bioethics Centre (Royal Children’s Hospital, Melbourne). Her research focuses on paediatric clinical ethics, parenthood, and the ethical challenges faced by junior doctors.

42 C.L. Nieman et al. 2008. Fertility Preservation and Adolescent Cancer Patients: Lessons from Adult Survivors of Childhood Cancer and Their Parents. In: Woodruff TK, Snyder KA, editors. Oncofertility: Fertility Preservation for Cancer Survivors. New York, NY: Springer: 201–217. 43 Ibid: 214.

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