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.Consent and privacy are generic issues with all so-called DNAdatabanks and DNA sample collections, not just umbilical cord bloodbanks.15Privacy is of special concern in collecting, testing, and storing umbili-cal cord blood because the source of the blood is a newborn.There isgeneral agreement that no genetic testing should be done on children fordiseases that will not manifest themselves until adulthood and for whichthere is no preventive intervention or treatment that must be done prior toadulthood for efficacy.16 It is possible that some additional useful informa-tion about the safety of the umbilical cord blood sample could be gainedby following the child as he or she develops.Nonetheless, such surveil-lance seems both unlikely as a practical matter and potentially dangerousto the child s personal and informational privacy.It has been suggestedthat linkability in research projects involving umbilical cord blood bemaintained but that appropriate firewalls be constructed to protect 154 Bioethics and Health Lawpersonal identity.The best privacy policy for public umbilical cord bloodstorage, however, is to unlink the sample from all identifiers so that theblood can be freely tested without simultaneously testing the child and itsmother.This policy would also prevent recipients or their families fromtrying to contact the donor for another donation in case of a relapse.Phy-sicians who want to protect their patients privacy should advise their pa-tients against donating umbilical cord blood to a blood bank that retainspatient identifiers.Commercialism may affect umbilical cord blood collection in two sig-nificant ways.First, the physician or hospital that collects the umbilical cordblood may want to use it for their own purposes, for example, to try de-velop a commercially viable product or for a research project.In eithercase, the physician has a fiduciary obligation to inform the mother of theresearch use, as well as the possible commercial applications of the research,and to obtain her consent to use the cord blood in this manner.17Commercialism s second notable impact has come from the establish-ment of for-profit companies that market their services directly to pregnantwomen, offering to store umbilical cord blood for a price.Most of thesecompanies have Web sites, and some of their advertising is readily acces-sible via the Internet.The direct marketing approach raises the obviousissues of truth in advertising and exploitation of patients at a particularlyvulnerable time.The frequently used term biological insurance, for ex-ample, is misleading, since the probability of the umbilical cord blood beingof use to a family with no history of blood disease approaches zero (ap-proximately 1 in 20,000 for the first 20 years of life), and one s own stemcells may also be less effective than a donor s.18One underlying legal question is the nature of the relationship betweenthe woman s attending physician (who must collect or supervise the collec-tion of the blood) and the company: is the physician, for example, actingas an agent of the company (in which case the company is responsible forthe physician s actions and negligence), or as an independent contractor(in which case the company is not responsible for the physician s acts)?The companies seem to want to treat the physician as an agent of the pa-tient.At least one company, Viacord, has asked the patient to sign an in-formed consent and release form in which in lengthy legalese the patientagrees (on behalf of herself and her child and everyone else) never to sueViacord for anything.In the research setting such a waiver of rights vio-lates existing federal research regulations
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