Table 4 Summary of literature addressing ethical recommendations for surgical intervention in DSD patients

Gillam, et al. 2010 [51]

Review

Early Gonadectomy:

1. Psychological issues poorly understood

1. Improve understanding physical and psychological dilemmas facing each patient

1. Medical indication (i.e. hernia)

2. No guarantee of adult gender identity

2. Thorough informed consent process

2. Parental concerns about malignancy

3. Surgical decision making places pressure on parents, who may be incompletely informed

3. Referral to multi-disciplinary team – and if not available refrain from any potentially harmful practice or surgery

3. Difficulty accepting phenotype without surgery/improved psychological outcome

Late Gonadectomy – after puberty completed

No Gonadectomy:

1. Long term follow up required

Wiesemann, et al. 2010 [50]

Review

“Unless well-being would otherwise be severely impaired, decisions about removal of organs or structures important to… physical integrity or sexual identity (such as gonads) should be left up to the affected persons themselves”

1. Secrecy within families, lack of informed consent and adolescent assent

1. Acknowledge that even a participant child cannot act in their future self’s best interest, only in the current best interest

2. conflict between the interests of a child and the interests of the future adult

2. In the absence of an objective best interest for the child in managing DSD, parents should play a major role in decision making, on a case-by-case basis

3. conflict between right to familial privacy and state’s interest in protecting the child

3. We should not make a sweeping recommendation on the timing of a surgical intervention in the absence of medical necessity

4. immediacy of health threat

4. Involvement of the child at a developmentally appropriate level

5. child’s right to dignity and bodily integrity

5. Allowing the adult patient to access all past medical records

6. Careful documentation of outcomes for future information

Maharaj, et al. 2005 [52]

Review

1.Paper addresses only infants and young children

1. Minimizing physical risk to child

1. Act in the best interests of the child, taking account wishes of the parents

2. Unclear how to decide whether it is worse to be at future risk of malignancy or risk of distress in the future from gonadectomy

2. Minimizing psychosocial risk to child

2. In situations that are complex with no clear best answer, where future outcomes are difficult to predict, parents’ wishes should be respected

3. Fertility potential may be a factor, including presence and functionality of gonads, or presence/functionality of other reproductive organs. May conflict with another risk, such as future malignancy.

3. Preserving potential for fertility

3. None of the principles should be considered to outweigh the others and must be appropriately balanced

4. Acknowledging that there may be medical advances in the future which could allow fertility even in apparent non-functional gonadal tissue

4. Preserving or promoting capacity to have satisfying sexual relation

4. Ethical decision-making in this field should be approached systematically and in a multi-disciplinary fashion

5. Leaving options open for the future

6. Respecting parents’ wishes and beliefs