Ethical+considerations+in+behavioral+genetics

=Ethical Considerations in research= toc **Learning outcome:**
 * ** Discuss ethical considerations in research into genetic influences on behaviour. **

" As with all levels of analysis, the considerations are the same – but you should be able to discuss them in the context of biological research. These considerations include: //gaining informed consent, confidentiality of information obtained, no undue stress to the participant, no irreversible harm to the individual, and the importance of respecting the person as an individual and not treating him/her as an “object.//” " (Retrieved from http://cranepsych.edublogs.org/2010/03/28/weekly-summary-march-22-26/ )
 * John Crane** has this to say about ethical considerations in general. Put this together with the considerations discussed in pages 59 - 60 of Crane and Hadad:

Crane - pages 59-60 (use the copies of Crane on the side bench) Law et al. - pages 64 - 65
 * Section 1: Read and take notes **
 * General source**


 * Ethics and the Human Genome Project**
 * 1) [|Ethical, legal and social issues] - // this site highlights the questions surrounding the main issues - keep in mind that any answer you construct would not deal with more than 3 of these issues/questions //
 * 2) [|Ethics and genetics of human behavior] - // a useful overview of the contentions in this field regarding ethics in behavioral genetics //
 * 3) [|The ethical issues raised by behavioral genetics in humans] - // this is a longer article and a 'heavier' read, but it provides access to a number of relevant examples //
 * 4) [|Ethical, legal and social implications of genetic research] - // in this link, just read the following 2 'vignettes' pasted in below (the others are more relevant to the subject of genetics and Biology) //
 * [|Nature vs. Nurture in the Criminal Justice System]
 * [|Access by Law Enforcement]


 * Ethics and Twin Studies**
 * 1) [|An example of a violation of ethics in genetic research]
 * 2) [|How the Minnesota Twin Family Study protects participants](a direct example)

You may need this for further research (eg. TOK essay or EE etc) [|Archived material on ethical, legal and social issues in the Human Genome Project - scroll down the page for the most relevant links]
 * Extension (if you would like to explore further)**


 * Section 2: Synthesis **
 * 2 specific considerations are outlined below. **
 * Keep in mind that this LO is not asking for you to describe violations of ethics (though you can do so) - it is asking for a discussion of considerations.**
 * An essay answer must deal with at least 2 specific considerations and refer to specific evidence (studies and/or clauses from the ethical considerations outlined by the APA or BPA)**
 * **1 consideration per paragraph**

__ **Consideration 1 - protecting participant privacy and confidentiality** __

** READ the relevant section on the ethics page **


 * ANSWER THE FOLLOWING **
 * Question 1**: Identify AND explain 2 specific clauses related to this from **either** the APA **or** the BPA.


 * Question 2**: How is this dealt with in genetic research?
 * explain aims and procedures of a specific study (t//he Minnesota Twin study would be best//)
 * participant must sign informed consent form indicating understanding and knowledge of study and potential dangers
 * coding information
 * making sample anonymous (limitation - prevents follow ups)

__** Consideration 2 - Specific harm to participant or participant's family **__

(Source: Crane & Hadad, pages 59 - 60)
 * A quick review of general examples of risk to participants:**
 * 1) link between genetic heritage and individual lives
 * 2) problematic for individual's family
 * 3) stigma - affect job or insurance applications

Examples of harm directly relevant to genetic research
 * misattributed paternity
 * unrevealed adoptions
 * stress from discovering that you carry a gene for a specific disorder


 * ALSO**
 * causing offence through breaking cultural laws - this can cause emotional trauma to the participant and/or the family
 * Example: **
 * // genetic studies may break tribal laws //
 * How is this dealt with? **
 * // Consent must be obtained from community leaders such as tribal elders //

__** YOUR TASK **__


 * 1) Select the points you will discuss with this consideration. For example:
 * how studies (such as the Minnesota Twin study) protect participants
 * an example of a violation that caused harm
 * 1) ** Outline information relevant to your points, from the reading you did in section 1 **


 * Section 3: **
 * For consideration 3 - exploring case studies **


 * Case study 1: **
 * READ**
 * 1) [|The XYY controversy]
 * 2) [|The Walzer and Gerald genome study]

To expand your understanding of this situation, to practice for your EE and to improve your information literacy skills, select ONE additional source from the readings in source 1 above and see if you can find them through our school's data bases.
 * INVESTIGATE**

Find and read this study: Hutchins and Mednick (1977) - links between children raised by criminal parents and future criminal behavior.
 * Case study 2: **

[|Caspi and Moffatt - nature and nurture] The New Zealand study
 * Case study 3: **

(//as an extension//) Ethical issues surrounding genetic research into Alzheimer's Disease [|Genetic testing and Alzheimer's] [|Genetic research into Alzheimer's] [|Genetic Testing and Counseling for Early-onset Familial Alzheimer Disease] [|Ethics of dementia research]
 * Case study 4: **


 * SYNTHESIS**
 * Choose ONE of the following issues as an ethical consideration.**
 * Task: Discuss this question using //evidence// from the //above// case studies (at least 2)**
 * How should the principle of informed consent be interpreted when the subject of a research project is newborn infants?
 * What possible outcomes would justify a research project that will have the inevitable outcome of __**stigmatizing**__ the subjects in a way that may result in serious restrictions on their personal freedom?
 * Under what circumstances is it ethical to deny human subjects of research projects information about the results of that research? Should parents be informed of potential aberrant behavior in their child? Is this unfair to the child if you do? Is this unfair if you don't? Is there an answer?
 * Should there be any limits to the genetic information that a pregnant women can use in deciding whether to interrupt a pregnancy.


 * Outline your essay answer **


 * Each of the considerations you worked on above will be discussed in 1 paragraph **
 * This means 1 consideration = 1 paragraph **

=Extension=

[|Behavioral genetics in criminal cases] [|Ethics and case studies] [|Behavioral genetics and criminal DNA databases] [|Exploring ethical issues in biology and medicine] [|The scarlet gene - behavioral genetics, criminal law, and racial and ethnic stigma] [|Behavior genetics and the prospect of ‘‘personalized social policy’’] [|A second look at twin studies]