The Nature of Science strand

Living World

Students develop their awareness of ethical issues associated with genetics research involving human subjects.

Read the story. Check for understanding of the basic genetics concepts conveyed. Also check that students understand, at the broad level of principle, the link between genes, cell division, and cancer. Do they understand that some – but not all – cancers have inherited forms. In these cases genetic testing can determine the probability of getting the cancer, but not necessarily when this will happen. Understanding the difference between probability and certainty is an important aspect of this capability to develop.

Adapting the resource

Another important aspect of this capability is developing the appreciation that socioscientific issues have ethical dimensions. The following adaptation could help develop students’ appreciation for the nature and complexity of these issues and obligations:

It is important that scientific investigations are conducted ethically, especially those that involve humans and/or sentient animals. In this case the whanāu initiated the research and sought out a researcher who they thought would lead the research in ways that were sensitive to their ethical concerns.

1. After reading the story students could discuss the steps that were taken by the researchers to ensure the data was gathered in ways that respected the knowledge, feelings and values of the whānau.
2. Now choose an aspect of the story with obvious ethical dimensions and ask students if they can say what the specific ethical issues might be in each case these. Examples could be:
   • People cannot be forced to give blood samples, no matter how much they are needed for the research to work. [Ethical issues include freedom of choice, giving informed consent, lack of coercion, etc.] 
   • Tissue samples already in hospital collections cannot be accessed without consent. [The ethical issue here is that research ‘data’ can only be used of the purpose for which they were collected, unless informed consent is given by the donors of that data for a different use to be made.]
   • The family at the centre of the project did not want to “feel like guinea pigs” (page 8). [Respect for research participants is a basic ethical commitment. It is reflected in how the research is conducted, how the participants are involved in the meaning that is made from the data collected, and how they are spoken and written about in any subsequent publications.]
3. Students could then discuss how these ethical issues were addressed.

Supporting students to become scientifically literate, i.e., to participate as critical, informed, and responsible citizens in a society in which science plays a significant role is the purpose of science in NZC.

Scientifically literate citizens need to think about whether or not they consider research to be ethical and who benefits from any particular findings. Such concerns are particularly acute when researching inherited illness in humans, and are compounded when indigenous world views and values are different from those of science. Beyond a high-level understanding of genetics concepts, this could be the most important aspect of this topic to develop. (More important, say, than spending time on detailed explanations of mitosis and meiosis.)  

Can students identify ethical issues in genetics research with human subjects and give reasons for their choices?

Can they describe simple ethical measures that researchers can take?

For suggestions about adapting tasks in ways that allow students to show progress in engaging with science see  Progressions .

The Science Learning Hub has several  ethical thinking frameworks , with advice about ways to use these in the classroom:

The capability 5 resource, Solving the dog death mystery, explores ethical issues in science when using small mammals for bioassay procedures. 

The Santa Clara University website has a page that focuses on  Ethical Decision Making  in many aspects of life.

• Staying Alive (L2) Connected 2, 2012
• Yucky bugs (L1, 2, 3 & 4) Video from DOC website 
• Hukanui Enviroschool (L2, 3 & 4) Connected 3, 2002
• The Shell Collector (L2, 3 & 4)Connected 1, 2005
• Rocky shore food web (L3 & 4) Assessment Resource Banks
• Rapid response to the Rena (L3 & 4) Science Learning Hub
• Tidal Communities: Interdependence and the Effects of Change (L3 & 4) Building Science Concepts, Book 22
• Science Fairs (L3 & 4) No specific resource
• Solving the dog death mystery (L5) Science Learning Hub
• What’s my carbon footprint? (L5) Genesis Energy resource
• Biomagnets (L5 & 6) NCEA Level 1 assessment exemplars