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Ethics of Biobanks

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Published: Tue, 12 Sep 2017

Biobank is a large collection of biological information and tissue samples kept for research purposes. It is also a powerful tool used in the study of diseases. It is an important resource in supporting different types of contemporary research such as personalised drug and genomics.

Biobank enable scientist to have cross purpose research studies in which data derived from samples in biobanks can be used for multiple researches. E.g. Biobanks can enable scientist identify disease biomarkers by using large collections of samples which represent hundreds of thousands of people.

It’s been shown that before biobanks was invented little or known was known about different disease and biomarkers and scientist struggled to find enough samples to know what sort of disease they are dealing with.

Although it’s not all good news for the use of Biobanks due to research ethics and medical ethics. This issues were raised because of PRIVACY whereby operating biobanks without the knowledge of governing bodies and policies could be bad for the societies that take part in Biobank programs

There are types of biobanks, Tissue banks and Virtual biobanks and population banks, before I explain the types I’m going to explain a lot more about biobanks

Biobanks incorporate cryogenic storage facilities for samples in which it can be an individual refrigerator or a big warehouse refrigerator. They are kept up to standard by the hospital, pharmaceutical companies and universities etc.

Disease oriented biobanks may be classed by design and purpose because this biobanks collect information or samples representing different forms of diseases in which it can be used to also find a biomarker associated with a specific disease. Population based biobanks are big biobanks that collect large samples from large numbers of people in a community. This is done to look for biomarkers for disease in a general population.

Tissue Banks- Store and harvest human tissue for transplantation, stem cell and researches based on tissue and cells

Virtual biobanks samples are collected and termed to meet national regulations and integrate epidemiological cohorts

Population banks they store organic material associated with clinical, lifestyle and environmental data.

Biobank ethics

There are many roles which comes into effect when researchers wants to collect a human specimen for research and storing it. The issues that comes into effect are the right of the participants to be private, ownership of the specimen and where the data is derived from. Also how far the donor can consent to the research study should be considered and to which extent the donor can far in sharing research results. The main issue is that biobanks collect sample and data for different future research and it is not easy to get a specific consent for any single research.

Biobank controversies[1]

issue

consensus

controversy

notes

Commercialization

Different aspects of biobanks serve public, private, commercial, and non-commercial interests.

How can policymakers set guidelines to fairly balance public, private, commercial, and non-commercial interests?

Who owns biological specimens and data derived therefrom?

When biobanks and related projects are publicly funded, the result will benefit private industry. To what extent is this outcome satisfactory? (Social Fairness). It may also undermine public trust in biobanks projects.

It may skew research agenda in favour of research projects which are more profitable and compromise necessary but not profitable research.

discrimination, including Genetic discrimination

Biobanks should prevent donor communities from facing discrimination as a result of participating in a Biobank project

Research reveals private information and release of it may cause participants to face discrimination. What responsibility does the Biobank have to mitigate the problem?

Participants may reveal their own information because of participation in a Biobank and subsequently face discrimination. What responsibility does the Biobank have to mitigate the problem?

informed consent

Donors to biobanks need a consent process adjusted specifically to biobanks.

What breadth of consent should biobanks have?

[2]

Institutional review board

It would be nice to have a robust governance system before biobanks are created.

How will a good governance system be designed?

The oversight institution reviewing biobanks should be independent of the Biobank.

Where should checks and balances be?

An individual organization needs multinational support to do international research.

Who should govern when research spans different countries with different legal and personal rights standards?

Privacy for research participants

Donors should have their specimens sufficiently anonymised.

A specimen by nature includes some data about donors – how much anonym zing is sufficient?

[3][4]

Donors have some right to return of results.

How does one return results to anonymised donors?

[3][5]

Donors have a right to withdraw from research.

Specimens can be destroyed, but to what extent should anonymised data which has already been shared be withdrawn?

[5]

Data derived from specimens should be shared.

Who gets access and how much?

[3]

Changing technology makes it difficult for researchers to say how safe participant information is.

What protections can be promised?

[6]

Return of results

Donors have a right to know the purpose of a Biobank and what results it generates

When should all donors share general information and when does each donor have a personal right to personal information?

Public consultation

Everyone wants the researchers and community to work together.

What resources should be spent doing outreach, and how much involvement does the community want, and what role should the community have?

Communities should participate in writing laws, standards, and policies for research.

How can communities be encouraged to participate, who represents the community, and how much involvement should there be?

Patients should be involved when there is research on diseases.

When people are desperate because of a disease, to what extent can they participate fairly without feeling obligation to support research?

Communities which donate specimens to a Biobank should have special involvement in their Biobank.

What kind of involvement?

Resource sharing

Research efficiency increases greatly when resources are shared.

How should beneficiaries share costs? This is especially problematic when a Biobank is a national resource and another country wants access to it.

Results of studies should go to the widest possible audience.

When should this happen and in what way? Can results be released with commercial licensing for use?

 


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