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Overview the establishment of Taiwan Biobank Issues about ELSI

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Title: Overview the establishment of Taiwan Biobank Issues about ELSI


1
Overview the establishment of Taiwan Bio-bank
-Issues about ELSI
PanelistFan Chien-Te and Liao Chia-Cheng
2
?. Introduction
  • For the purpose of thoroughly understand various
    kinds of the phenomenon of human body,
    large-scale data bases about tissue of human body
    have gradually been set up
  • At the same period of striding the biotechnology
    era worldwide, Taiwan also start its own program,
    that is, island of biotechnology plan

3
?. Introduction
  • Accordingly, how to build up Taiwan Bio-bank is
    the most important project, we are hoping to have
    a chance to obtain the breakthrough power in the
    field of Taiwans medicine research.
  • What are the problems of current legislations?
    What is the respective solution?

4
?. Characteristics of Gene Message
  • Gene is a section of DNA (deoxyribonucleic acid)
    with particular function, which is the
    fundamental unit of creature cell, could be
    handed down from generation to generation
  • According to the international announcement of
    gene data released by UNESCO, the information
    carried by gene has totally four characteristics
    (7/8)

5
?. Characteristics of Gene Message
  • firstly, anticipation of personal gene structure
  • secondly, immense potential influence to
    population, family, offspring
  • thirdly, important information hided in gene may
    not know before collection
  • fourth, gene is of great importance to groups
    culture of individual.

6
?. Establishment of Gene Data Base
  • Intending to understand the relationship among
    gene, disease and human phenotype, small scale
    collection of specimen cannot satisfy the
    necessity of research. Because the small-scale
    data base may be limited in particular disease,
    area and population,while the causing of human
    disease is due to multiple factors. At this
    point, deeper research needs a large number of
    research specimens.

7
?. Establishment of Gene Data Base
  • At this point, deeper research needs a large
    number of research specimens.
  • Moreover, only when we have a great quantity of
    specimen and statistical data, the relationship
    of gene, situation and disease could be known by
    the accurate count.

8
?. Establishment of Gene Data Base
  • And then, providing a large number of gene
    specimen for comparing is the mainly function of
    gene data base.
  • Following the establishment of gene data base,
    the focusing center of physical gene research is
    to spread the research from individual to the
    whole population.

9
?. Establishment of Gene Data Base
  • By combining the gene information of healthy
    medical treatment record, livelihood type and
    family tree, then we can utilize relevant
    technique to look for significant knowledge of
    gene.

10
?. Establishment of Gene Data Base
  • the advanced countries are proceeding to have
    their own program of gene data base, which is for
    the purpose of understanding various diseases
    caused by living custom, and hoping to develop
    the tactics of anticipating diseases happen,
    develop new medicine and therapy

11
? Profile of Taiwans Development
  • In order to promote Taiwans domestic research
    level of biotechnology, highest level of
    executive branch has invited central research
    institute, scientific commission, hygiene office,
    economic department and research institute of
    hygiene to plan together for the program of
    Biotechnology Island
  • Taiwan Bio-bank is playing an important role in it

12
? Profile of Taiwans Development
  • Taiwan Bio-bank is willing to explore the mutual
    affect among gene phenomenon, disease and
    environment and making full use of it to
    individual disease diagnosis, therapy and
    prophylaxis
  • To think about the executive aspect of Taiwan
    Bio-bank program is extensive, so feasibility
    study becomes the necessary research route.
  • The program is actually executed by research
    institute of biotechnology

13
? Profile of Taiwans Development
  • For legitimacy and morality concerns, feasibility
    study will mainly focus on the design of
    procedure and evaluation of result without
    collecting any human tissue.

14
?. Related Subject of ELSI on Taiwan Bio-bank
  • Summary
  • this article centers Informed Consent,
    Protection of Privacy, Benefit Sharing and Public
    Participation, to survey the disputing topics and
    observe Taiwans recent legislation, especially
    if such legislation is following the regulations
    of UNESCO.

15
?. Related Subject of ELSI on Taiwan Bio-bank
  • Relevant Subjects
  • 1. Informed Consent
  • 2. Management of Data and Maintain of
    Privacy
  • 3. Benefit Sharing
  • 4. Participation of the Public
  • 5. Particular Theme for Discussion Solution
    of Dispute

16
?. Related Subject of ELSI on Taiwan Bio-bank
  • Informed Consent
  • 1.Informed Consent is one of the popular
    principles of medical treatment and morality. In
    the early, this principle is for esteeming and
    protecting the people who participate in medicine
    research, especially the human body
    experimentation. Before the experimentation, the
    researchers must tell the people about the
    details and obtain the consent.

17
?. Related Subject of ELSI on Taiwan Bio-bank
  • 2.The principle of Informed Consent is sometimes
    discussed under the field of medical treatment
    conduct in Taiwan. However, the utilizing part of
    genetic information was less to touch upon.
  • 3.To think of the specific announced before,
    this causes a lot of dispute in how to apply the
    principle of Informed Consent. The crucial
    reasons are about who should be informed what
    is the scope of authorizing consent.

18
?. Related Subject of ELSI on Taiwan Bio-bank
  • 4.Whether the right of consent involving the
    third party, International Declaration on Human
    Genetic Data didnt give related suggestion
  • 5.in Universal Declaration on Bioethics and
    Human Rights set up the authorized consent of
    community or representative person to replace the
    individual consent

19
?. Related Subject of ELSI on Taiwan Bio-bank
  • 6.At this point, we may infer that the opinion of
    UNESCO about the procedure of decision is mostly
    the Individual Autonomy. If the character of the
    research is for specific population, Group
    Autonomy can be used as a necessary procedure

20
?. Related Subject of ELSI on Taiwan Bio-bank
  • 7.Some scholar introduced the concept of Group
    Consent when Individual Consent is easily making
    dispute, believing if the analysis of genetic
    information is by the unite of peculiar
    population, the achievements of research making
    out benefits or injure are related to all the
    population. So the Group Consent of mass people
    is the most difficult challenge.
  • 8.Therefore, if this is realized, its obvious
    more strict than regulations of UNESCO.

21
?. Related Subject of ELSI on Taiwan Bio-bank
  • 9.As to the range of authorization, there will be
    a lot of large-scale statistics and comparison of
    genetic data base program between genetic body
    and related factors. The research style is not
    known in future, so the purpose of usage cannot
    be told specifically

22
?. Related Subject of ELSI on Taiwan Bio-bank
  • 10.However, the principle of Informed Consent
    should follow the conception within international
    declaration of UNESCO for human genetic data and
    international life morality and Declaration of
    the Rights of Man, that is, the principles of
    prior, express, free, informed.

23
?. Related Subject of ELSI on Taiwan Bio-bank
  • 11.In Taiwan, the team of feasible research
    believes that its necessary to bridge the
    knowledge gap between researchers and
    participants, in order to making the participants
    understand the public welfare as well as the
    necessity of adopting the general consent.
  • 12.Still, other appropriate supporting measures
    are needed to maintain the autonomy of
    participant.

24
?. Related Subject of ELSI on Taiwan Bio-bank
  • Management of Data and Maintain of Privacy
  • 1. Firstly, when the genetic information is
    collected and If some kinds of diseases are
    examined in the result suffered later, Is there
    obligation to inform the participants?

25
?. Related Subject of ELSI on Taiwan Bio-bank
  • 2. Secondly, because of the danger of gene from
    clan, about danger of privacy infringement, the
    benefits of third party should be considered,
    which is announced in UNESCO s international
    declaration

26
?. Related Subject of ELSI on Taiwan Bio-bank
  • 3. At last, about the management and usage of
    genetic data base, which concerns genetic
    information, how to manage the anonymous
    information, and the use of anonymous data?

27
?. Related Subject of ELSI on Taiwan Bio-bank
  • Benefit Sharing
  • 1. Human Genome Organization deems that
    participants should get somewhat benefits and it
    believe that commercial research organization
    should bring from 1 percent to 3 percent income
    after taxes to provide for the benefit of
    participant, and about non-commercial research
    organization could supply particular population
    with necessary healthy benefit.

28
?. Related Subject of ELSI on Taiwan Bio-bank
  • 2. International Declaration on Human Genetic
    Data of UNESCO (52) believe that the usage of
    genetic data research result is sharing with
    society, and announcing the possible form of some
    benefits sharing, including special assistance
    for particular population, providing of medical
    treatment and care, new course of treatment or
    supplement of medicines, give of health care,
    assist of establishing research resources and
    facilities.

29
?. Related Subject of ELSI on Taiwan Bio-bank
  • 3. About the way to favor and benefit, Taiwans
    importance is on choosing of benefit sharing, and
    what is the way and way of feedback with
    participant? The effort is to raise the the
    dispute and bring about the respect of all
    circles. Let common people discuss and understand
    respective benefit groups opinion, instead of
    practical tactic decided by minority of talent
    guys.

30
?. Related Subject of ELSI on Taiwan Bio-bank
  • Participation of the Public
  • 1. The construction of interactive
    communication with masses is important implement
    and research project. On the degree of questions,
    the feasibility studies nowadays are construction
    of inside network to accurately record real data
    according with experts and scholars opinions to
    set up platform of communication on the common
    people, except all above mentioned, circuit
    statement assembles are needed. For instance, the
    way and basis of public communication and review
    and innovation of the way in social inclination
    investigation could be used as one ring of ELSI
    about feasibility study project.

31
?. Related Subject of ELSI on Taiwan Bio-bank
  • Particular Theme for Discussion Solution of
    Dispute
  • 1. The characteristics of disputes arising
    from the bio-banking
  • first, the injured is majority second,
    difficulty of proof third, the imbalance of
    bargaining powers

32
?. Related Subject of ELSI on Taiwan Bio-bank
  • 2. The plan of Taiwans research team is briefly
    schemed below
  • form subcommittee of dispute, aim at the
    communication and coordination before dispute and
    individual case when disputes arise, the front
    mentioned subcommittee should arbitrate first.

33
?. Related Subject of ELSI on Taiwan Bio-bank
  • 3. Other Procedure Subject
  • (1). uncertain of damage
  • (2). group litigation

34
  • Thank You
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