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Re: Re: Fertility preservation for children treated for cancer (2): ethics of consent for gamete storage

Dear Editor,

The two publications on fertility preservation for children [1,2] raise important issues but several issues need to be clarified.

Specifically, ICSI is not a method to reverse male infertility in whatever circumstance. ICSI provides an effective solution to severe male infertility problem but, offspring and partner issues need to be considered carefully [3-6]. The suitability of pre-pubertal testicular tissue is questioned since technology surrounding cryopreservation and in- vitro manipulation of prepubertal testicular tissue is stated as being 'entirely experimental'. This is also true of adult testicular tissue which may similarly have immature germ cells.

The question of peripubertal boys and the use of rectal electrostimulation raises seriously important issues about the pain and psychological effect this procedure as a `first sexual experience' could have on the patients future sexual development and outlook [7,8]. The procedure needs to be performed under anaesthesia. Any suggestion that this approach could be tried on peri-pubertal patients would be ill advised since aiming to obtain an ejaculate necessarily signifies post pubertal status and one has to be certain this level of maturity has been attained. This technique could be open to abuse since in strict cultures where masturbation is forbidden a parent could ask and consent to this procedure in post pubertal boys leading to a conflict in the requirement of an 'autonomous consent'. Sperm storage under forced conditions will most likely be illegal, with possibilities of assault charges to the person taking the sperm sample. There remains also the probability of having mature sperm even if the patient has not yet reached the HFEA stated Tanner stage II maturity level. Such a situation would present a legally awkward sperm storage scenario with apparently no regulatory guidance [9].

With respect to the statement that 'fertility preservation procedures for children are experimental', it is worth stating that the whole field of human assisted reproductive technology (ART) , ranging from cryopreservation of sperm, oocyte, embryo, blastocysts, to the use of IVF, ICSI and PGD has never undergone classical clinical trial evaluation. In this respect ART continues to be experimental which is partly why the field is uniquely regulated by statute under the HFEA. There are advantages in bringing children's gonadal tissue under regulation since in the eventual use for procreation the HFEA's permission will be needed.

The second paper deals with the complex issue relating to the ethics of consent for gamete storage and experimentation. The title is broadly incorrect since children's gonadal tissue do not contain `gametes'. Where gametes are contained we have adopted the term adolescents [10] to help achieve consistency with reproductive biology, development and regulatory framework which strictly requires consent under the HFEAct 1990 [9,11]. The appeal for 'intervention to preserve fertility to have sound basis for evidence and moral provenance' is reasonably well understood by all practitioners but in the report [2] seems to signal 'why things should not be done'. It should be remembered that the whole field of ART continues to be practised on its experimental origins world-wide reasonably sensibly and sensitively. Most of the consent models referred to in the text are the US style 'assent type consent' which deserve acknowledgement [12,13].

The statement that 'the HFEA recommendations were understandably not designed with children or cancer patients in mind' is not entirely correct in relation to cancer patients where the HFEA displayed enormous sensitivity and fairness. Following our representation on behalf of cancer patients in the year the HFEAct came into force, the HFEA responded by issuing a special direction to allow extension beyond the restrictive 10 year storage time for sperm, after considering the implication especially for adolescent cancer patients.

In the long term efforts should be made to find ways of bringing childrens gonadal tissue under statutory HFEA regulation [14,15]. This can be done by persuading Parliament through professional or patient representation to enlarge the regulatory remit of the HFEA, to help enhance patients interest, and in achieving consistent policies. Furthermore, it should be borne in mind that the UK legal landscape has changed significantly with the Human Rights Act 1998 [16], favouring patients determination and sensibly engaging this Act may become a useful option .

References

(1) Grundy R, Gosden RG, Hewitt M, Larcher V, Leiper A, Spoudeas, HA, Walker D, Wallace WHB, 2001. Fertility preservation for children cancer treated for (1): scientific advances and research dilemmas. Arch Dis Child, 84, 355-359.

(2) Grundy R, Larcher V, Gosden RG, Hewitt M, Leiper A, Spoudeas HA, Walker D, Wallace WHB. 2001. Fertility preservation for children cancer treated for (2): ethics of consent for gamete storage and experimentation. Arch Dis Child., 84, 360-362.

(3) Bonduelle M, Camus M, Devos, A et al., 1999, Seven years of intracytoplasmic sperm injection and follow up of 1987 subsequent children. Hum Reprod., 14 (Suppl.1), 243-264.

(4) Ericson A and Kallen B, 2001. Congenital malformations in infants born after IVF: a population based study. Hum Reprod., 16, 3, 504-509.

(5) Wennerholm UB, Bergh C, Hamberger L., et al., 2000, Incidence of congenital malformations in children born after ICSI. Hum Reprod., 15, 944 -948.

(6) Ahuja KK, Simons EG. Cancer of the colon in an egg donor: policy repercussions for donor recruitment. Hum Reprod 1998; 12: 2230-2234.

(7) Hogav Y, Dan-Goor M, Yaffe H, Almagor M, 2001. Electroejaculation before chemotherapy in adolescents and young men with cancer. Fertil Steril., 75, 4, 811-813.

(8) Schmiegelow ML, Sommer P, Carlsen E, Sonksen JOR, Schmiegelow K, Muller JR, 1998, Penile vibratory stimulation and electroejaculation before anticancer therapy in two pubertal boys. J Pediatr Hematol Oncol, 20, 426-8.

(9) Bahadur, G., Whelan, J., Ralph, D., and Hindmarsh, P., 2001, Gaining consent to freeze spermatozoa from adolescents with cancer: legal, ethical and practical aspects. Hum. Reprod., 16, 1, 188-193.

(10) Bahadur, G., and Hindmarsh, P., 2000, Age definitions, childhood and adolescent cancers in relation to reproductive issues, Hum. Reprod., 15, 1, 227.

(11) Bahadur G, Whelan J, Davies MC, Ralph, D., 2001. Cancer patients, gametes, gonadal tissue, and the UK legal status, Reproductive BioMedicine Online. 2, 1, 8-10.

(12) Broome., ME ; 1999; Consent (assent) for research with pediatric patients. Semin Oncol. Nurs., 15, 2, 96-103.

(13) Broome ME and Stieglitz KA; 1992, The consent process and children. Res. Nurs Health. 15, 2, 147-52.

(14) Bahadur G and Ralph D, 1999, Gonadal tissue cryopreservation in boys with paediatric cancers. Hum Reprod., 14, 1, 11-17.

(15) Bahadur G, Chatterjee R, Ralph D. 2000, Case report: Testicular tissue cryopreservation in boys. Ethical and legal issues. Hum Reprod., 15, 6, 1416-1420.