Human Genetics Research in Vietnam and Ethical Aspects

1. The ASEAN-EU-LEMLIFE Project 24-26 January 2004, Bangkok, Thailand Human Genetics Research in Vietnamand Ethical Aspects Le Dinh Luong Vietnam National University

2. Current Status of Human Genetics Research in Vietnam National Research Programs 2001-2005 Research Institutions Involved Publications 2003 Research and Service Areas BioArchive System in Vietnam

3. National Research Programs2001-2005 • Sequencing of mitochondrial DNA of different Vietnamese ethnic groups and directed applications. • Application of molecular techniques for diagnosis of human hereditary diseases in Vietnam. • Application of molecular techniques for human pedigree determination and for forensics in Vietnam. • Animal stem cell research for genetic engineering.

4. Institutions Involved in Human Genetics Research • Institute of Biotechnology, NCST, Hanoi • Nat. Inst.of Malariology, Parasitology and Entomology • Institute of Oncology, Hanoi • University of Natural Sciences, VNU, HCM • Hanoi Medical University • National Institute of Pediatrics, Hanoi • Center of Biotechnology, VNU, Hanoi • Pasteur Institute, HCM • University of Natural Sciences, VNU, Hanoi • Biochem. Technology Dept, Ministry of Public Security • Forensic Science Institute, Ministry of Public Security

5. Publications (2003) 1. The Polymophism of HLA-DRB1, -DBB1 And G6PD Deficiency of Muong Ethnic In Hoabinh – Vietnam. Vu Trieu An at al. Hanoi University of Medicine 2. Screening 3 Case Mutated Dystrophin Gene In Total 11 Vietnamese Duchenne And Becker Muscular Dystrophy. Nguyen Duc Bach at al. Institute of Biotechnology, NCST, Masafumi MatsuoKobe University Graduate School of Medicine, Japan 3. Molecular-Based Study On Breast Cancer Samples Of Vietnamese Patients Using Mitochrondrial D-loop As Genetic Markers.Nguyen Thanh Dam at al. Institute of Oncology 4. Establisment of Ames Test And Application In Detection of Carcinogen, Mutagen. Huynh Ngoc Vi Ca at al. University of Natural Sciences, VNU, HCM 5. Detecting G6PD Deficiency And Analyzing Variants of DNA Mutation of Some Individuals with G6PD Deficiency from Kinh, Muong, Racley, Tay, Katu Ethnic Groups Living in Hanoi, Hoa Binh, Hue and Khanh Hoa Provinces. Nguyen Thi Ngoc Dao at al. Institute of Biotechnology, Kaoru Nishiyama Kobe University School of Medicine, Japan

6. Publications 2003 (continued) 6. Determination of D13S317 Allele Frequencies In A Group of Vietnamese. Nghiem Xuan Dung. Biochemistry Technology Deparment 7. Identification of Remains by mtDNA Analysis. Le Quang Huan at al. Institute of Biotechnology, NCST 8. Designing Expression Vector for a Gene Coding Antigen CD25 Specific for Blood Cancer. La Thi Huyen at al. Institute of Biotechnology 9. DNA Fingerprinting in Vietnamese Populations by Sex Chromosome Located Loci. Le Dinh Luong, at al. Center of Biotechnology, VNU, Hanoi 10. Primary Determination of Allele Frequencies of CSF1PO Locus in Vietnamese Populations. Ngo Tien Quy at al. Institute of Forensics 11. Using PCR Multiplex for Forensic Analysis and Paternity Determination by Some Single Locus STR Primers. Trinh Tuan Toan. Forensic Science Institute 12. Detection of the 30bp Deleted Mutation in C-Terminus of LMP1 Gene from Vietnamese Nasopharyngeal Carcinoma. Nguyen Van Do at al. Hanoi Medical University

7. Research and Service Areas • Genetic Testing • Diagnosis of Genetic Diseases • Genetic Counseling • Forensics • Courts

8. BioArchive System in Vietnam • THERMOGENESIS CORP. sold a BioArchive System to the Blood Transfusion & Hematology Center in HCM City for about US$200,000 (June 2000). • The system can be also used by the major Cord Blood Banks • The BioArchive System is the international standard for collecting, processing, and archiving cryopreserved hematopoietic stem cells sourced from placental/cord blood • Phil Coelho, CEO of THERMOGENESIS CORP. "With this acquisition, Vietnam is adopting the same state-of-the-art stem cell technology as the major industrialized nations"

9. Alpha-1-antitrypsin deficiency Amyotrophic lateral sclerosis Alzheimer's disease Ataxia telangiectasia Gaucher disease Inherited breast and ovarian cancer Hereditary nonpolyposis colon cancer Charcot-Marie-Tooth Congenital adrenal hyperplasia Cystic fibrosis Duchenne muscular dystrophy Dystonia Fanconi anemia, group C Factor V-Leiden Fragile X syndrome Hemophilia A and B Hereditary Hemochromatosis Huntington's disease Myotonic dystrophy Neurofibromatosis type 1 Phenylketonuria Adult Polycystic Kidney Disease Prader Willi/Angelman syndromes Sickle cell disease Spinocerebellar ataxia, type 1 Spinal muscular atrophy Thalassemias Tay-Sachs Disease The Diseases Diagnosed by Genetic Testing

10. The Diseases Diagnosed by Genetic Testingin Vietnam • Duchenne muscular dystrophy/Becker muscular dystrophy (DMD; severe to mild muscle wasting, deterioration, weakness) • Hemophilia A and B (HEMA and HEMB; bleeding disorders) • Thalassemias (THAL; anemias - reduced red blood cell levels)

11. Current Status of Bioethics Awareness • Bioethics awareness from outside • Knowledge of Bioethics comes from outside through Media (newspapers, TV programs, Radio, Internet) • Ethical workshops or training courses organized in Vietnam by joint effort with oversea experts or organizations • Information comes from International Meetings • Bioethics understanding is limited • No curriculum in schools and higher educational institutions • No regular courses through over the country • Religion influence is not essential

12. BIOETHICAL ISSUESIn Human Genetics Research • Genetic Testing • Is genetic testing regulated? • Does insurance cover genetic testing? • Prenatal testing: A modern Eugenics ? • Discrimination because it involves genetic tests? • Diagnosis of Genetic Diseases • Are patients being properly informed about the risks and limitations of genetic technology? • How does personal genetic information affect an individual and society's perceptions of that individual? • Who owns and controls genetic information and human materials?

13. Government Decree on 15/02/2003 Banning Human Cloning • The Vietnam government decree on 15/02/2003 banning human cloning, surrogacy and all means of choosing the sex of embryos. However, animal cloning and stem cell research are acceptable. • The decree allows the application of reproductive technologies, such as in vitro fertilization. • Foreigners can use assisted reproductive technology services in Viet Nam, but they are banned from donating or receiving eggs, sperm and embryos.

14. What Vietnam Should Do for Bioethical Improvement? • Improvement of public understanding of bioethics (Introduction of bioethical courses into secondary and high schools; International and regional training courses; Bioethics Societies; Regular programs in Media...) • Vietnam should improve the public knowledge on modern biotechnology (to narrow the gapbetween traditional cultures and modern knowledge of sciences) • Facilitating individual right to keep personal her/his own genetic information (Legislation system, Appropriate health care system...)

15. Thank you !