Louise Warnich

The SASHG is a non-profit organization for health care professionals involved and

interested in human or medical genetics.

http://www.sashg.org/

OUR MISSION:

1.To advance the practice and science of human genetics in Southern Africa2.To facilitate contact between those persons engaged in clinical practice, investigative sciences and research in human genetics without discrimination on the grounds of race, religion or sex3.To maintain the highest ethical and professional standards in all its affairs and activities

• SASHG supports o National Forensic DNA database (NFDD)o Criminal Law (Forensic Procedures) Amendment Bill (B2-2009)

• SASHG submission regarding the 2009 version of the Bill o Most concerns have been addressed in 2013 version

• SASHG submission in 2012 supported establishment of an ethics committee / oversight body

• The National Forensic Oversight Board (NFOB)o Monitoring ethical and privacy complianceo Discussing ethical, legal and social implications

• Various ethical, legal and social issues associated

• Input from experts in the field of human genetics should be considered

http://digitalarchivingmatters.files.wordpress.com/2013/01/dna-double-helix1.jpg

1. Independence of the Forensic Science Laboratories from the Police and Prosecutors

• Support the integrity of the criminal justice systemo as is the case in the United Kingdom

2. Data security & access policies to be clarified3. What information will be included on the database indices,

alongside each profile? 4. Will a unique identifier be used for each sample, which will

link to personal identification through an RSA ID number?5. What will be the personal identification for illegal

immigrants or refugees?6. The issues of ethical and privacy compliance with respect to

data security and access should be monitored and discussed by the NFOB.

3. Scope of the use of the data to be specified

• Rapidly evolving technologies and growth of knowledge in the field of human genetics

• In the future, it may be possible to use DNA data to predict the appearance of a persono e.g. eye, hair and skin colour

3. Would this be permissible in the case of identification of unidentified human remains?

4. Quality management

• NFOB tasked with proposing minimum quality standards• National Commissioner will issue national instructions,

ensure security of database and ensure adequate training and regulations

• Concerns:o National Forensic Laboratories certification/accreditationo Adequate training of all key personnel (crime scene, police, lab)o Chain of custodyo Turnaround times

5. Adequate funding to ensure that the activities proposed in this Bill can be fully implemented

•SASHG can make substantial contributions•Propose to have an expert in the field of human genetics on NFOB