25 November 2011
The ICB considers the ethical problem of knowing the truth with reference to one’s conception modalities and biological origins in a general sense in the sphere of medically assisted procreation.
The document recommends that the parents disclose the modalities of their conception to their offspring by means of filters and suitable criteria (proportionality, sustainability, relevance, bearing, etc) also with the aid of counselling. Furthermore, it is recommended that the offspring be always recognised the right to access the registers containing the genetic data and medical record of the donors of the gametes, as this information can at times be indispensable for their health.
The question remains, to which the Committee has not yet been able to give a unitary answer, of whether the search for one’s origins can justify the child’s right to know the personal data of the donor or donors of gametes in the sphere of artificial fertilisation.
Some members of the ICB consider it more opportune for anonymity to be maintained with regard to personal data, given that the offspring has a genetic but not a relational connection with the ‘biological procreators’. The main concern is that the disclosure of personal data might alter the existential balance of the original family with possible external interferences in the family plan. Within the sphere of this evaluation the risk was not excluded of facilitating forms of market, given that it is easier to ask the person supplying genetic material upon payment for absolute transparency or other forms of possible serious consequences, than the real ‘donors’ whose gesture is supposed to be based on the philosophy of voluntary free donation, mainly characterised by altruism and solidarity.
On the other hand, other members recognise the offspring the right to full information concerning the donor of the gametes. Information about one’s origins is considered indispensable for the reconstruction of the offspring’s personal identity; the offspring’s fundamental right to know their origins is therefore recognised, in contrast with any possible interest on the part of the parents to maintain secrecy and of the donors to keep their anonymity. Moreover, this knowledge is motivated by reasons of parity and non-discrimination, as it is not legitimate either from the ethical or juridical point of view to stop only the offspring born by such technique from seeking information about their biological origins. It has also been highlighted how evading the request to know the truth implies a specific form of violence: the violence of whoever knows the truth that regards another person and is in a position to disclose it and refuses to do so, maintaining an unjust position of power towards that person.
The ICB has stressed the need to direct the information modalities in both options according to the actual circumstances (considering the difference between minors and adults) and possibly with the help of psychological counselling that can give the necessary support to all the parties involved in the phase leading up to the ‘disclosure’. Should the care and protection of the minor’s health then make it necessary, it is indispensable that the doctor and/or medical facility, informed of the ways in which the child was conceived, and the parents having been informed too, or subject to the authorisation of the latter or, in the case of their refusal, of the competent judicial authority, always have the possibility to request the access to the records and the use of the data necessary for the diagnostic and therapeutic treatment of the under-age patient. With a similar aim it is hoped that there will be an ongoing relationship between the medical centres and donor/giver in time.