as well as open meetings to which any interested press/media are invited and at 
which parents would speak for themselves and answer questions. Plan B includes 
full disclosure of all facts related to the case, a "case-name" for the child 
(Baby ADA), no disclosure of family name or hometown, and a press conference in 
which the parents could directly answer questions from another site by live 
video camera, but shielded from view to protect their privacy. 
B. Partial Protection 
This option would mean no use of surnames or other revealing factors, such 
as 1) exact age. 2) family history. 3) hometown; also, if parents consented to 
interviews, these could occur behind a screen with a voice screen as well. If 
parents consented to photos, the child could be partially covered and not 
identifiabl e. 
C. Total Protection 
This option involves all of the features of the partial protection policy 
except that there would be no direct contact between the media/press and the 
parents. However, the parents would be expected to respond in writing or by 
tape recording to questions posed by the media/press (although they could not 
be compel 1 ed to do so) . 
This approach to privacy affects the selection process in one important 
way. Parents of the affected child must not only be able to participate in the 
usual way in the consent process, but also be expected to answer for themselves 
questions posed by others. 
(2) What provision will be made to maintain the confidentiality of 
research data, at least in cases where data could be linked to 
individual patients? 
No medical or research records would be shared with any third party 
without a legitimate need-to-know. Depending on the parents' choice of privacy 
184] 
Recombinant DNA Research, Volume 12 
